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... Program Evaluation for the Proposal of Group Therapy Services at a Pediatric Outpatient Clinic Lexy Hay May 5, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kristina Watkins, OTD, MOT, OTR Program Evaluation at a Pediatric Clinic 1 Program Evaluation for the Proposal of Group Therapy Services at a Pediatric Outpatient Clinic Lexy Hay, OTS School of Occupational Therapy, University of Indianapolis Program Evaluation at a Pediatric Clinic 2 Abstract A program evaluation conducted at The Childrens TherAplay Foundation, Inc. aimed to demonstrate the possibility of providing group therapy services in the pediatric outpatient clinic, as well as determine the most feasible strategies for group program development and implementation. The evaluation followed a mixed-methods design, gathering quantitative and qualitative data related to the foundations clinical and administrative daily processes. Analysis of the data and extensive research conducted on pediatric group therapy services informed the decision-making process in generating a proposal and guide for group therapy program development at the site. The results support the future development of group therapy programs as a feasible method of service delivery that can fulfill unmet needs, better enable the foundation to meet their mission and vision, and potentially provide greater opportunities for clients to reach their therapy goals. Program Evaluation at a Pediatric Clinic Program Evaluation for the Development of Group Therapy Programming at a Pediatric Outpatient Clinic The Childrens TherAplay Foundation, Inc. is both a not-for-profit organization and a pediatric outpatient clinic providing physical therapy (PT), occupational therapy (OT), and speech therapy treatment to children with disabilities. One unique aspect of this clinic is that therapists use hippotherapy as a treatment tool to help clients achieve their therapy goals. Hippotherapy is a treatment strategy that applies the purposeful movement, rhythm, and repetition of a horse to address functional goals (AHA, 2020; Childrens TherAplay, 2022). In the clinic, OT, PT, and speech therapy practitioners treat children ages 18 months 13 years with a wide variety of diagnoses. Some of the most common diagnoses they see in the clinic include autism spectrum disorder, cerebral palsy, down syndrome, spina bifida, developmental delay, and various rare genetic disorders. The Childrens TherAplay staff currently demonstrate a need to determine the feasibility of providing group therapy services in the clinic. Due to high demand and interest in the unique services offered at TherAplay, there is currently a large waitlist with a substantial wait time for children to be able to receive services. Therapy staff has also expressed that due to their current delivery of services, it is difficult to work on certain skills that would better enable clients to reach their goals. One solution discussed by staff is the possibility of providing group intervention services in the clinic; however, they do not currently have the time, resources, or information that would be necessary to begin providing these services. This doctoral capstone project evaluated the foundations current programs and processes to create a proposal and outline of how group interventions may be provided in the outpatient clinic to better meet the needs of the foundation and the clients they serve. 3 Program Evaluation at a Pediatric Clinic 4 Background Group therapy is an evidenced-based method of service delivery used to treat 2 or more individuals at one time to promote learning and skill development through the dynamics of group and social interaction (American Occupational Therapy Association, 2020; Cahill and Beisbeir, 2020). Using group interventions as a method of skilled therapy service delivery has indicated numerous benefits for clients, as well as for the administrative processes in place where the groups are being provided. Group therapy has been identified as a cost-effective method of service delivery in many different pediatric settings, that allows for the treatment of more individuals at one time, while still benefitting each individual client and enabling them to meet their client-centered goals (Hung & Pang, 2010; Schoen et al., 2020). In their study conducted in 2009, Leung et al. indicate that a group approach to therapy may be more practical than individual therapy given its potential to reduce total staffing hours needed for treatment implementation. While more recent studies continue to support these findings, researchers and clinicians also stress the importance of not providing group services solely based on that fact that it will benefit the therapists and the therapy administration, but because the use of a group intervention is going to be the best option for the given clients at the given time. Camden et al. (2012) found that groups are able to increase service accessibility at the sites where its being provided, at the same time as promoting positive therapy outcomes. The use of groups as a method of skilled therapy service delivery has indicated having many benefits among children (Rosenberg et al., 2015; Schoen et al., 2020). In 2015, Rosenberg et al. conducted a study to determine the effects of a group intervention among preschoolers with ADHD. The study included 11 weekly group sessions focused on developing executive strategies through the performance of functional tasks (Rosenberg et al., 2015). Researchers found that the Program Evaluation at a Pediatric Clinic 5 group intervention significantly improved daily functioning, executive function, and social function among the participants (Rosenberg et al., 2015). Schoen et al. (2020) found similar results in their feasibility study for a trampoline exercise group for children with Sensory Processing Disorder (SPD). The researchers found that as a result of their group intervention, children experienced significant gains in motor and psychosocial functioning (Schoen et al., 2020). Both studies indicate the use of group interventions at Childrens TherAplay may have the capability to benefit clients served in numerous ways. Recent literature shows that group intervention can benefit children with a variety of different diagnoses, including but not limited to ASD, ADHD, Developmental Delays, Sensory Processing Disorders, and Hemiplegia (Merz et al., 2020; Rosenberg et al., 2015; Ryan-Bloomer et al., 2020; Schoen et al., 2020). This will continue to allow TherAplay to fulfill their mission and vision of providing an inclusive and fully encompassing delivery method for treatment (Childrens TherAplay, 2021). Group programming also allows therapy staff the opportunity to address skills that are difficult to fully address when providing 1:1 therapy services. One specific area of occupational performance that is difficult to address in one on one treatment is social participation. Two different meta-analyses conducted in the past five years include a review of the current literature on the use and effectiveness of group-based social skills interventions (Gates et al., 2017; Wolstencroft et al., 2018). Gates et al. (2017) reviewed 19 randomized control trials (RCT), specifically looking at group social skills interventions' effectiveness. The researchers found that, of the RCTs reviewed, group social skills interventions demonstrated modest effectiveness among youth with ASD (Gates et al., 2017). Results further suggested that the groups' participants showed some improvement in social skills and competence compared to control Program Evaluation at a Pediatric Clinic 6 groups after the interventions were complete (Gates et al., 2017). Similarly, Wolstencroft et al. also found that current literature demonstrates moderate effect sizes for improving social skills following group intervention (2018). Needs Assessment During the first two weeks of the Doctoral Capstone Experience (DCE), a needs assessment, including a SWOT analysis, was conducted to determine the specific needs of Childrens TherAplay, as well as strengths, weaknesses, opportunities, and threats to the clinic and the foundations ability to provide group treatment. This assessment and analysis revealed 3 major needs related to providing group interventions in the clinic that this project aimed to meet: Childrens TherAplay currently has a very large waitlist preventing a considerable number of clients and families from receiving necessary services; The current service delivery model used in the clinic makes it difficult to address certain skills that are necessary to enable clients to fully meet their goals; Administrative staff, clinic staff, and clients parents/caregivers are currently lacking general knowledge in group therapy, including its benefits, best practice in providing group intervention, and how to incorporate groups into the clinics current daily processes. Given this information and the strong evidence based found in the literature for the use of group therapy services in pediatric settings, it was decided that an evaluation of current daily processes of Childrens TherAplay was necessary in order to create a proposal of feasible logistics for developing and implementing group therapy services in a way that would best suit the needs of the site. Theoretical Framework The Framework for Evaluation in Public Health was the major theoretical framework used to guide this project. The Program Performance and Evaluation Office (PPEO) of the Centers for Program Evaluation at a Pediatric Clinic 7 Disease Control and Prevention (CDC) developed the framework to be a practical and nonprescriptive tool designed to better organize and summarize the basic elements of program evaluation (Koplan et al., 1999). The framework outlines six steps for program evaluation: engage stakeholders, describe the program, focus the evaluation design, gather credible evidence, justify conclusions, and ensure use and share lessons (Koplan et al., 1999). The program evaluation at Childrens TherAplay generally followed the six-step process outlined by the evaluation framework. While this program evaluation did not necessarily take place in a public health setting, the framework was deemed to be of beneficial use as it encourages an evaluation approach that incorporates the routine program operations at the site (Gill et al., 2016; Koplan et al., 1999). This was seen as a key aspect of the evaluation to take place at TherAplay as it would be necessary for the evaluation methods to be able to be integrated into the already in place daily processes of the clinic and the foundation. A Quality Improvement (QI) approach also helped to guide parts of this project. QI includes the use of a deliberate process which responds to specific needs of a population and improves quality of services (Riley et al., 2010). The evaluation at TherAplay was approached with the concepts of QI in mind, with data being utilized to make decisions to introduce the idea of a new group therapy program and policies that would come with it to address identified needs and could improve efficiency, effectiveness, performance, and other improvements in quality of services at the clinic (Riley et al., 2010). Project Design and Implementation The project design followed the six-step process outlined by the CDC Framework for Evaluation described above. The first step involved determining and engaging the potential stakeholders at TherAplay. The second step included observing the daily processes already in Program Evaluation at a Pediatric Clinic 8 place, determining and describing the need for a group therapy program, and determining the clinical and administrative features and processes that would need to be considered to provide a skilled group therapy program, as these would guide the focus of the evaluation. This step included a literature search for peer-reviewed RCTs of group therapy programs, a search of information on group therapy programs that have been provided in the past or are currently provided by different clinics and therapy organizations, and through gathering information via observation in the clinic and interviews/meetings with clinical and administrative staff. The third and fourth step of the project were to then focus the evaluation design and gather credible evidence to assess the issues of greatest concern to the stakeholders and strengthen the evaluation results and implications (Koplan et al., 1999). Quantitative and qualitative methods were used to gather data and information to be used to demonstrate a need and guide final decision making in determining the most feasible strategies for developing and implementing group therapy services. Quantitative data collection methods were put into place to gather information related to therapist interest in groups, parent/caregiver interest in groups and what skills they would be interested in addressing, reimbursement rates and likelihood of policy coverage for group interventions, and therapy waitlist trends. All other processes and features determined in step 2 were evaluated via qualitative methods such as interviews and focus groups with clinic and administrative staff. Evidence gathered through the research completed during the second step of the project added credible evidence to evaluation findings and decision making. Information found in OBrien and Solomons (2021) Occupational Analysis and Group Process textbook also strengthened the credibility and informed decisions made as a result of the evaluation. More details related to quantitative and qualitative data collection is discussed in the Project Outcome section of this paper. Program Evaluation at a Pediatric Clinic Step 5 included analysis and reflection of evidence gathered to guide final decision making for a group therapy program proposal. A proposal was then created, demonstrating the need and benefits of group therapy services, as well as outlining the logistics that were determined to be most feasible to best meet the needs of the site and their clients. The sixth and final step involved ensuring future use and sharing information learned. The final outcome of the evaluation was a group therapy guide designed to fulfill a variety of needs for the staff at TherAplay. The guide included the program proposal, as well as various resources and outlines to help guide and ease the process of group therapy development and implementation in the future. This also included information, ideas, and example protocols for two different groups that could potentially be provided at the clinic, including a social skills group and a feeding group. A final list of what was included in the final group therapy guide for the site can be found in Appendix A. To ensure future use, this guide was placed in a physical binder in the therapy office, as well as was uploaded to the shared drive on the staff computer system so that it could be easily accessible by all staff at any time in the future. The information learned was presented and shared with therapy and administrative staff, including most key stakeholders, during a staff meeting. Project Outcomes Quantitative Data Collection Various quantitative data collection methods were utilized to demonstrate both the need and feasibility of group program development in the final group therapy program proposal. Online surveys gathered information from current therapists and parents/caregivers of current clients regarding levels of interest and support for the potential program. Both surveys yielded positive results, indicating high interest in the future development and implementation of group 9 Program Evaluation at a Pediatric Clinic 10 services. Of the therapists who responded to the survey, 100% answered Yes or Maybe that they would be interested in being involved in both the development and implementation phases of a group therapy program. A 5-point likert scale was used to measure parent/caregiver levels of interest in having their children participate in group therapy programs if the service was to be offered in the future. On a scale of 1 to 5, 1 being not at all to 5 being very much so, the average response was a 3.8, with 73% of families reporting that they would be between somewhat and very much so interested in their child participating in a group program. To evaluate financial feasibility for the group therapy program proposal, data was gathered over the span of 12 weeks to determine the likelihood of insurance reimbursement for group therapy interventions. This information was gathered utilizing a process already in place at the clinic in which the clinic operations manager fills out, for each new client at evaluation and each current client every 12 months, what they refer to as an insurance half-sheet. This sheet reflects details of what the clients/familys insurance policies will cover in terms of the services they are to receive in the clinic. In adding a slot for group therapy to this process, 5 different policies were represented by the data gathered, with 100% reported to cover billed group therapy interventions for PT, OT, and speech therapy services. While this was a seemingly small data set, administrative staff at the clinic expressed that the 5 policies represented in the data covered the majority of the policies most frequently held by their clients families. Therefore, it was determined that this data indicates a high likelihood for insurance policies to reimburse billed group services, demonstrating financial feasibility for group therapy programs. An analysis of trends of the current therapy waitlist provided information for determining logistics, such as when groups should be provided, as well as demonstrated a need/opportunity for quality improvement. The analysis of trends indicate that it may be beneficial to provide Program Evaluation at a Pediatric Clinic 11 group therapy services in the afternoons, given that 46% of families currently on the are waiting for afternoon appointment availability. Qualitative Information A variety of formal and informal qualitative methods of information collection were also utilized to further guide the decision-making process in determining proposed logistics for the development and implementation of group services. This information was gathered via meetings and interviews with stakeholders and staff members, through informal observation of daily processes, and extensive search of the literature related to pediatric group therapy services. All information gathered is reflected in the final group therapy proposal which is part of the Group Therapy Guide which can be found by scanning the QR code in Appendix B. Summary As a strong and innovative foundation, Childrens TherAplay strives to provide the highest quality of care possible to the clients and families they serve. To do this, they are continuously undergoing processes of quality improvement, searching for opportunities to address unmet needs, and/or to improve the quality of their clinical and administrative processes and the services they provide. Prior to the start of this capstone project, staff at TherAplay demonstrated an interest in group therapy services, with a need to determine if it could be a feasible method of therapy service delivery that could address a variety of different needs and improve overall quality of services. Group interventions have been proven as an effective intervention strategy for addressing numerous skills among a variety of different pediatric populations, while still providing client-centered services (Beisbeir & Cahill, 2020). Group therapy provides an effective model of service delivery that can increase accessibility and decrease waiting times for therapy (LaForme Fiss, 2012). Program Evaluation at a Pediatric Clinic 12 A program evaluation conducted at The Childrens TherAplay Foundation, Inc. supports the development of skilled group therapy programs as a feasible method of therapy service delivery in the outpatient clinic. Quantitative and qualitative analysis of data and information gathered related to administrative and clinical processes demonstrate the need for group program development. The information gathered also informed the decision-making process in creating a proposal of what these services could look like, including an outline of strategies determined to be most feasible for the development and implementation of group therapy services in the future. Conclusion The program evaluation project contributed significant insight into the benefits and possibility of providing skilled group therapy services at Childrens TherAplay. The administrative and clinical staff have gained awareness of the need and potential of integrating groups into their practice, as well as ideas for how to approach program development in a way that will be most feasible and successful, based on evaluation results. The entire TherAplay team can use the final project outcome to guide the future development and implementation of group interventions and further meet the needs of their clients and families. At the conclusion of this project, the executive director at TherAplay demonstrated great interest in moving forward with developing and trialing the use of group therapy services in the clinic. The outcome of this evaluation and project can be used moving forward as a guide for the programs development and ease the process for those involved. The guide also includes a list of next steps and future considerations for developing a group program (Appendix B). Program Evaluation at a Pediatric Clinic 13 References American Hippotherapy Association. (2020). What is hippotherapy? https://www.americanhippotherapyassociation.org/ American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74s2001 Cahill, S. M., & Beisbeir, S. (2020). Practice GuidelinesOccupational therapy practice guidelines for children and youth ages 521 years. American Journal of Occupational Therapy, 74, 7404397010. https://doi.org/10.5014/ajot.2020.744001 Camden, C., Ttreault, S., & Swaine, B. (2012). Increasing the use of group interventions in a pediatric rehabilitation program: Perceptions of administrators, therapists, and parents. Physical & Occupational Therapy in Pediatrics, 32(2), 120-135. https://doi.org/10.3109/01942638.2011.616267 Childrens TherAplay Foundation Inc. (2021). About us. https://www.childrenstheraplay.org/about-us Gates, J., Kang, E., & Lerner, M. (2017). Efficacy of group social skills interventions for youth with autism spectrum disorder: a systematic review and meta-analysis. Clinical Psychology Review, 52, 164181. https://doi.org/10.1016/j.cpr.2017.01.006 Gill, S., Kuwahara, R., & Wilce, M. (2016). Through a culturally competent lens: Why the program evaluation standards matter. Health promotion practice, 17(1), 5-8. https://doi.org/10.1177/1524839915616364 Program Evaluation at a Pediatric Clinic 14 Hung, W. W. & Pang, M. Y. (2010). Effects of group-based versus individual-based exercise training on motor performance in children with developmental coordination disorder: A randomized controlled study. Journal of Rehabilitation Medicine, 42. 122-128, doi:10.2340/16501977-0496 Koplan, J. P., Milstein, R., & Wetterhall, S. (1999). Framework for program evaluation in public health. MMWR: Recommendations and Reports, 48, 1-40. LaForme Fiss, A. (2012). Group intervention in pediatric rehabilitation. Physical & Occupational Therapy in Pediatrics, 32, 136-138, doi:10.3109/01942638.2012.668389 Laforme Fiss, A. C. & Effgen, S. K. (2007). Use of groups in pediatric physical therapy: Survey of current practices. Pediatric Physical Therapy, 19(2), 154-159. doi:10.1097/pep.0b013e31804a57d3 Leung, D. P. K., Ng, A. K. Y., & Fong, K. N. K. (2009). Effect of small-group treatment of the modified constraint-induced movement therapy for clients with chronic stroke in a community setting. Human Movement Science, 28, 798808. http://dx.doi.org/10.1016/j.humov.2009.04.006 Merz, J. A., Nakasuji, B., & Mollo, K. S. (2020). Occupational therapy group programming for adolescents with developmental and learning disabilities: A retrospective documentation review. The Open Journal of Occupational Therapy, 8(3), 1-18. https://doi.org/10.15453/2168-6408.1675 O'Brien, J. C., & Solomon, J. W. (2021). Occupational analysis and group process (2nd ed.). Elsevier Health Sciences. Riley, W. J., Moran, J. W., Corso, L. C., Beitsch, L. M., Bialek, R., & Cofsky, A. (2010). Defining quality improvement in public health. Journal of Public Health Management Program Evaluation at a Pediatric Clinic 15 and Practice, 16(1), 5-7. doi: 10.1097/PHH.0b013e3181bedb49 Rosenberg, L., Maeir, A., Yochman, A., Dahan, I., & Hirsch, I. (2015). Effectiveness of a cognitivefunctional group intervention among preschoolers with attention deficit hyperactivity disorder: A pilot study. American Journal of Occupational Therapy, 69, 6903220040. http://dx.doi.org/10.5014/ajot.2015.014795 Ryan-Bloomer, K., Farmer, K., Goossen, A., Tien, J., Vaeth, M., & Tackett, B. (2020). Efficacy of intensive, group-based constraint-induced movement therapy (CIMT) for young children. American Journal of Occupational Therapy, 74(4_Supplement_1), 7411515383p1-7411515383p1. Schoen, S., Valdez, A., Ferrari, V., & Spielmann, V. (2020). A trampoline exercise group: Feasibility, implementation, and outcomes. American Journal of Occupational Therapy, 74(4_Supplement_1), 7411520478p1-7411520478p1. Wolstencroft, J., Robinson, L., Srinivasan, R., Kerry, E., Mandy, W., & Skuse, D. (2018). A systematic review of group social skills interventions, and meta-analysis of outcomes for children with high functioning ASD. Journal of Autism and Developmental Disorders, 48(7), 22932307. https://doi.org/10.1007/s10803-018-3485-1 Program Evaluation at a Pediatric Clinic 16 Appendix A Included in Group Therapy Guide Program Evaluation at a Pediatric Clinic 17 Appendix B Group Therapy Guide *Scan this QR code to access the full Group Therapy Guide left to the site Program Evaluation at a Pediatric Clinic 18 Appendix C Doctoral Capstone Experience and Project Weekly Planning Guide Wee k 1 DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) Orientation Weekly Goal 1. Complete orientation by the end of the week Screening/Evaluatio n 2. Begin information gathering for Needs Assessment by the end of the week Objectives Tasks Meet with site mentor, therapy staff, administrative staff, and barn staff for orientation to the clinic, barn, and office and to introduce myself and what I will be doing for the duration of my 14 weeks Ensure all orientation paperwork is complete Update MOU Meet and discuss MOU changes with site and faculty mentors Gather Needs Assessment info during meetings/intervi ews with key stakeholders/sta ff SWOT analysis Date comple te 1/10 1/10 Ensure meetings with all key personnel 1/21 Finalize MOU Set up meetings/intervie ws with key stakeholders/staf f Create a list of SWOT analysis and needs assessment questions/talking points for meetings/intervie ws with stakeholders/staf f 1/12 1/12 1/21 Program Evaluation at a Pediatric Clinic 19 Carryout interviews/meeti ngs 2 Screening/Evaluatio n 1. Complete/ update Needs Assessment by the end of the week Continue to gather Needs Assessment info during meetings/intervi ews with key stakeholders/sta ff Complete SWOT analysis 3 Implementation 1. Begin to explore possible evaluation questions by the end of the week 2. Begin to explore evaluation methods by the end of week 4 Review/analyze needs assessment information to determine what all will need to be evaluated and what kind of information will need to be gathered Continue literature search as needed Determine clinical and administrative considerations for group interventions for OT, PT, and SLP Continue to carry out interviews/meeti ngs Generate overview of strengths, weaknesses, opportunities, threats, and general needs regarding project/program development Complete overview writeup of strengths, weaknesses, opportunities, threats, and general needs regarding project/program development Search literature for logistics information and clinical considerations for groups 1/21 1/27 1/27 Ongoing as necessar y 1/25 1/27 Review textbook for information regarding group intervention Find information on pre-existing group programs provided in 1/26 2/3 Program Evaluation at a Pediatric Clinic 20 outpatient pediatric settings Search/review information regarding program evaluations, quality improvement methods, etc. to determine best approach for evaluation 4 Implementation 1. Determine final evaluation questions by mid-week 2. Determine all evaluation methods by mid-week Search/review information regarding program evaluations, quality improvement methods, etc. to determine best approach for evaluation Continue literature search as needed Outline evaluation questions and possible methods Review evaluation Visit AOTA, APTA, and ASHA websites for information related to group intervention 2/3 Review past course material on quality improvement and program evaluations Do any additional research on program evaluation methods as necessary Review past course material on quality improvement and program evaluations Do any additional research on program evaluation methods as necessary Search literature for logistics information and clinical considerations for groups 2/3 2/3 Ongoing as necessar y 2/3 1/30 Review needs assessment/SWO T analysis and other information gathered from weeks 1-3 to 2/2 2/3 Program Evaluation at a Pediatric Clinic 3. Begin creating any necessary evaluation materials by the end of the week 21 questions, methods, and overall plan with key stakeholders determine evaluation focus Contact site mentor and foundation CEO/acting therapy manager to set up meeting Create talking points for meeting Update evaluation questions and methods after meeting if necessary Design/create any surveys, questionnaires, polls, etc. planned to be used as evaluation methods 2/10 Program Evaluation at a Pediatric Clinic 5 Implementation 1. 22 Put into action all quantitative data collection methods by the end of the week Create parent survey Send out parent survey Ensure insurance halfsheets have been updated 2. Begin analysis of information gathered from therapist survey by the end of the week Record data from google survey results Determine implications of data related to therapist buyin/interest 3. Begin outline for program proposal by the end of the week Determine questions for survey 2/9 2/9 Meet with Kaylin to create survey/combine with her questions to be complete d next week Get approval from Kathy 2/9 Create Survey monkey from list of survey questions Check folder in patient advocate office for status of half-sheets 2/10 2/10 2/10 Record any info gathered thus far from halfsheets to be complete d next week Create spreadsheet to track data to be complete d next week *started 2/8 Create outline of all information to be gathered and determined throughout evaluation Enter all data gathered in spreadsheet Create visuals/graphs to represent data Determine format of proposal/outline *started 2/8 Program Evaluation at a Pediatric Clinic 23 Create list of all that will be included in proposal Program Evaluation at a Pediatric Clinic 6 Implementation 1. 24 Complete an alysis of information gathered from therapist survey by the end of the week 2. Complete outline for program proposal by the end of the week 7 Implementation 1. Begin developing ideas for 1 potential group to be carried out in the future by the end of the week Record data from google survey results Enter all data gathered in spreadsheet Determine implications of data related to therapist buyin/interest Create visuals/graphs to represent data 2/14 2/14 2/16 Create outline of all information to be gathered and determined throughout evaluation Backup session ideas with literature Determine format of proposal/outline Create list of all that will be included in proposal Literature search as needed Begin outline of ideas Format outline for ideas Discuss ideas with site mentor Meet with site mentor 2/16 *began 2/21 ongoing 2/21 2/23 2/23 2. review 8 9 Implementation Implementation Mid-term 1. Complete an alysis of information gathered from parent/caregiv er survey by the end of the week Check in on progress toward goals and timeline Record data from survey results Complete analysis of survey results Determine implications of data 2/23 Meet with site mentor Make changes as needed to better meet final goals Enter all data gathered in spreadsheet Create visuals/graphs to represent data 3/1 3/2 Program Evaluation at a Pediatric Clinic 25 10 Implementation 1. Create final write-up of outline/progra m plan including all determined logistics, data, and mock protocols Organize information gathered during weeks 3-9 11 12 Implementation Discontinuation 1. Begin wrapping-up/ finalizing group therapy guide Complete final analysis of all quantitative data gathered Complete organization of information 13 Dissemination 1. Prepare for and disseminate project by the end of the week Create handout for presentation Prepare for presentation Complete presentation 14 Dissemination 1. Complete final group therapy guide for the site by the end of the week Reflect feedback from staff Organize information into physical binder Complete final analysis/implicat ions of insurance/half sheet data Complete final analysis/implicat ions of therapist and parent/caregiver survey data Make final edits to documents Gather and organize all necessary information to include in handout Create talking points for presentation Disseminate project during staff co/lab Make necessary changes/addition s based on staff feedback during dissemination Make final edits to documents Print all documents 4/11 4/10 4/11 4/12 4/13 4/13 4/13 4/13 Program Evaluation at a Pediatric Clinic 2. 26 Final Review Organize information into S-Drive Meet with site mentor for final review Organize documents 4/13 Make final edits to documents 4/13 Organize into folders on SDrive Complete evaluation of site Meet with site mentor 4/13  ...

... Improving the Health Literacy Program at the NeuroDiagnostic Institute Colin M. Hauber May 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kelsey Robertson, OTD Abstract The following paper includes background information regarding the adult mental health and forensic population at the NeuroDiagnostic Institute. The adult mental health population has vast health disparities that prevent the clients from successful community reintegration. The capstone project addressed increasing health literacy and the implementation of a health literacy program at the NeuroDiagnostic Institute as a research-based option for increasing effective communication between healthcare professionals and clients. The health literacy project is supplemented by a 5-week trial health literacy adult group session led by the capstone student to gather valuable data, validate the use of health literacy, and validate the use of research-based assessment measures into the sites standards. The culmination of the project includes a final comprehensive health literacy training session to the adult population staff and a dissemination to the site clinical directors for continuation and sustainability of the health literacy program. Introduction The NeuroDiagnostic Institute (NDI) in Indianapolis is an in-patient facility for persons with neurological diagnoses where I am completing my Doctoral Capstone Experience (DCE) project. The Division of Mental Health and Addiction (DMHA) runs the facility through Indianas public mental health system. The facility works with clients evaluated by the Community Mental Health Center (CMHC) and works to transition clients back to the community or to another appropriate setting. The mission of the DMHA also includes being accessible to all people and communities of Indiana with person-centered and evidence-based high-quality healthcare. The clients at NDI are receiving cognitive rehabilitation from recreational therapists, clinical psychologists, psychiatrists, social workers, and nursing staff. Damar and Eli Lily partnered with NDI, but interactions are limited due to COVID-19. The facility also follows all HIPPA guidelines for client protection and privacy. My primary DCE project idea involves reviewing the health literacy format of NDI, improving upon their system, and then reviewing the outcomes of my work. The inspiration for my project idea came from identifying challenges that clients with neurocognitive diagnoses may encounter in the NDI facility that are difficult to address and therefore could be overlooked by the staff. Health literacy is the ability to receive and understand health information and make choices based on the information presented (Health Literacy, 2019). I want to investigate how much effort the site puts into health literacy for clients that may have a harder time understanding the literature and implement a system to create the best atmosphere for the clients. My goal is to show the importance of proper health literacy, increase clients health behavior, and create a long-lasting program that NDI can continue once my project is over. The remainder of the paper will cover my project creation, implementation, outcome measures, and dissemination to my site. Background Current research shows the need for a health literacy capstone project through the clear deficiency in client health literacy skills. There is currently a statistically significant difference between the health literacy of practitioners and people in the community (Tay et al., 2018). Additionally, not all practitioners met adequate health literacy levels (Bayati et al., 2018). The research supports the implementation of my project because both the practitioners and the clients could benefit from an increased knowledge in health literacy. There are current deficits that affect other areas of life. For example, low health literacy is linked to smoking, diabetes, and consistently making poor health choices (Gibney et al., 2020). Health literacy is necessary in practitioners to help clients and increase positive health behaviors and decrease hospitalization in the community. The research shows a discrepancy in health literacy levels, and my project aims at improving health literacy to affect health behaviors. Specifically, in mental health clients, low mental health literacy is correlated with low self-stigma and low motivation (Crowe et al., 2018). At NDI, clients with low mental health literacy will be less likely to engage in intervention, make worse health behavior choices, and have worse rehabilitation rates. In forensic patients with low motivation and high levels of shame, community rehabilitation success rates were lower for male forensic patients (Fuller et al., 2019). My project will work directly with forensic clients to increase motivation and selfstigma through health literacy intervention. All of the concepts are correlated. Higher motivation, positive health behaviors, and successful rehabilitation are all outcomes from health literacy intervention with clients. Currently, there is not much research into occupational therapy intervention in the mental health setting, but the limited research thus far shows that increased learning, positive work environments, and eliminating barriers to occupation promote recovery and successful reintegration into the community (Kirsh et al.,2019). The research supports my project idea to teach clients positive health literacy, increase positive health behaviors, and lead to a holistic positive change in the clients and successful discharge from the site. Jenny Weber, Erin Clampitt and I met virtually on the Microsoft Teams platform to complete the needs assessment. Erin and Jenny provided me with important background information about NDI and my expectations for working at the site. Jenny agreed that my project could work at NDI but that mentioned difficulty in getting all the staff to participate. Additionally, client intervention can be difficulty due to quarantining. Due to COVID-19, the diversity of populations at the facility is currently limited, and the future diversity of the facility is unknown. Currently the facility has mostly adult forensic clients and will be the population that I focus my project idea and experience around. The forensic adult population is a consistent diagnosis seen at NDI and will be best to plan my project implementation around this population. In previous studies, the health literacy project implementation takes around three to four years to be fully embedded in a system (Vellar et al., 2017; Allot et al., 2018). A multi-pronged approach to health literacy is most effective (Allott et al., 2018). The project should focus on workforce development, leadership, planning, and evaluation (Allott et al., 2018). The biggest determinant of success is long-term leadership involvement. My project will focus on planning, implementing, and proving the importance of the project to key stakeholders through data collection, analysis, and research. I will focus my project on the directors of the rehabilitation department to include health literacy in faculty training and in future group intervention sessions to increase the healthy autonomy of each client post-discharge from NDI. My project will be beneficial to NDI because I will be completing all the required source material and gathering a compilation of current evidence-based literature, assessment measures, and group interventions to be completed at the facility to increase client and faculty health literature. I will also be providing a presentation of the literature and the importance of my project to key stakeholders. Additionally, the evidence-based project will have no cost to the site for implementation and will be easily implemented into the current facility procedures. I will ensure the viability of my project through feedback and collaboration with all departments of the NDI faculty. The foreseen difficulties with my project include the accountability of the current faculty and the viability of client health literacy group interventions. The first problem with faculty accountability is designating a faculty member to encompass the responsibility of maintaining the health literacy program at NDI. The literature will eventually need updating, and I would need a faculty member to lead orientation of new faculty to positive health literature ideas. A lack of accountability would diminish the viability of my project. Previous literature suggests the creation of a health literacy ambassador role at the site, but NDI has limited budget and cannot afford the creation of a new position. Secondly, the faculty would need to designate a department to the continuation of health literacy group sessions. The sessions could be completed by recreational therapy, transitional care services, social work, or psychology but one group would need to take charge and lead the continuation of the groups after I complete my time with the site. Thirdly, the site would need to be intentional and specific in the clients placed in the health literacy group intervention groups. The groups are best designed for clients who are literate, engaging, and discharging to community. The health literacy group interventions are not best fit for every individual and will decrease in effectiveness with the wrong clients. OT Theory and Frame of Reference The model best suited for my doctoral capstone experience (DCE) project is the Ecology of Human Performance (EHP) Model. The EHP model has an emphasis on promoting health and rehabilitation while also preventing negative health behaviors (Cole & Tufano, 2008). The emphasis of the model directly correlated to my DCE project and is the main reason why I chose the EHP model. Additionally, the EHP model focuses on context and environment which is extremely important for an in-patient setting like NDI. The environment and context at NDI will determine the clients performance range because they will not be able to leave nor do they have an unlimited choice in task selection. The EHP also has clear strategies for intervention. The client is empowered to be the primary decision-maker and seek higher task performance through the intervention strategies of establish and restore, alter, adapt/modify, prevent, and create (Cole &Tufano, 2008). Research has also shown the model to be effective in education for adults with mental illness which directly relates to my project population area (Cole & Tufano, 2008). The frame of reference I chose for my DCE project is the Cognitive Behavioral (CB) frame of reference because CB focuses on psychological barriers to engagement (Cole & Tufano, 2008). The clients at NDI will have psychological and cognitive barriers that will be best addressed using the self-management techniques in the CB frame of reference. The CB is used for motivation and emotion to address barriers to performance (Cole & Tufano, 2008). My DCE project focus is on promoting positive health literacy and health behaviors through education that increases intrinsic motivation and emotional control. The CB frame of reference will help crease self-awareness and self-control of thoughts, feelings, and behaviors by increasing internal motivation and creating external reinforcers (Cole & Tufano, 2008). The CB frame of reference works well with the EHP model because both focus on internal motivation and have a realistic outlook on environmental impact on occupation. Together, CB and EHP will create selfawareness for the available performance range at the in-patient facility and promote self-control of positive behaviors and attitudes. Project Design Creation of a health literacy program at NDI is essential to increase the healthy decision making of the clients in the facility and the effectiveness of faculty information facilitation to clients. The program creation happened in two phases including creation of a faculty orientation session to health literacy and creating a client health literacy intervention group. The first step to becoming a health literate organization is increasing the health literacy of the faculty during orientation to create a baseline of skill for every employee. The literature suggests that there is a disconnect between the health literacy of healthcare professionals and the community, and that some healthcare workers do not meet adequate levels of health literacy (Bayati et al., 2018; Tay et al., 2018). With the high turnover rates currently reported at NDI, the health literacy orientation session would help increase the health literacy of the current staff as well as new employees to the healthcare setting. Additionally, increasing the health literacy of the clients is dependent upon the adequate levels of health literacy of the employees for facilitation of information. The outcome measure for the orientation session will be the feedback from the board of directors. The second part of my project includes creating a health literacy group session for the clients. Increasing the health literacy of the clients will increase healthy decision-making and increase independence in client-centered care. To individualize the health literacy program, I completed a trial run of the group session including pre/post-assessment measures such as the Short Assessment of Health Literacy (SAHL-E), General Self-Efficacy Scale (GSE), The Self- Advocacy Checklist, The Rosenburg Self-Esteem Scale, and The Patient Motivation inventory (PMI). I chose assessment measures that are valid, reliable, easily, and quickly administered, and pertain to increasing healthy decision-making in clients with mental health diagnoses (Gudjonsson et al., 2007; Lee et al., 2010). The challenges of my project implementation include choosing appropriate clients to gather information during my group sessions and limited staff to assist supervising and documenting on my sessions. Another challenge for my project dissemination is planning a presentation for both the staff development board of NDI and the therapy department. The challenges of my project will take patience on my end and cooperation on the end of the faculty at NDI which I have no control over. However, the successes of my project include the creation of a 6-week health literacy group intervention plan, creating therapeutic relationships with faculty and clients, and gaining skills and experience working in a mental health setting. The faculty are extremely helpful and timely with constructive feedback to increase my professional ability. At the completion of my project, another success/failure will be the determined by the collected data from the group intervention sessions. Project Outcomes To improve the health literacy of clients at NDI, a series of assessment tool were administered over a five-week period to observe ease of administration, validity with client population, and gain faculty feedback for viability of each assessment for the facility. The primary assessment tool used during the capstone project is the SAHL-E. The SAHL-E is an 18question assessment that requires patient to read aloud health literacy terms and match each word to an associated health literacy term. The assessment tests literacy levels and health information understand of each client which can impact the clients ability to partake in the shared decision- making of rehabilitation. The SAHL-E is a valid and reliable assessment when compared to other common health literacy assessments (Lee et al., 2010). When the SAHL-E was administered, the clients had an average baseline literacy of 15.8 score out of 18 which indicates average health literacy levels. The clients feedback included a few of the questions being difficult but overall agreed that the assessment was relevant to health information at the facility. The second assessment administered was the PMI. The PMI is a 16-question assessment with true or false statements that relate to the clients motivation with rehabilitation, institutionalization, and trust in the current facilitys ability to successfully rehabilitate the client. The administration of the PMI can gather information into the motivation and trust the client places on the facility and staff. The PMI is a valid and reliable assessment tool that has been deemed a conceptually meaningful scale in mental health populations (Gudjonsson et al., 2007). The clients average baseline score indicated a high feeling of failure and lack of trust in the facility. Clients feedback indicated that the assessment had questions very relevant to institutionalization and personal feelings of motivation for attending intervention sessions. The next two assessments administered were the GSE and The Rosenburg Self-Esteem Scale. The assessments were administered in tandem to observe clients belief in self-worth and self-ability. The Rosenburg Self-Esteem Scale is one of the most widely used self-esteem scales and is valid and reliable in adult populations (Rosenburg, 1965). The GSE is a valid and reliable assessment in mental health population (Schwarzer & Jerusalem, 1995). The clients reported high levels of self-efficacy with an average score of 26 out of 30 with higher scores indicating higher self-efficacy. The clients reported low levels of self-esteem with an average score of 17.8 out of 40 with higher scores indicating higher self-esteem. The final assessment administered was the Self-Advocacy Checklist which assesses clients perception of self-advocacy skills in daily life through a wellness recovery action plan (WRAP) (Jonikas et al., 2013). NDI already has WRAP group sessions for clients, so adapting the Self-Advocacy Checklist as a pre/post assessment would be beneficial to clients abilities. The clients reported high levels of self-advocacy as indicated by the checklists. Clients reported the most difficult area for self-advocacy as the doctors office. Summary The adult mental health and forensic population at NDI suffer from higher rates of comorbidities and lower level of client-centered decision making than the general population. The rehabilitation process at NDI focuses on successful discharge and community reintegration for the disenfranchised population with the help of a variety of healthcare professionals on site. The creation of a health literacy program at NDI supplements the rehabilitation process for clients in the adult mental health and forensic populations. The use of evidence-based assessment measures, client-centered decision-making, and increasing client self-advocacy are essential keys to increase successful community reintegration. Through the evidence-based adult group sessions, data showed important insights into the thoughts and feelings of the adult mental health population that are reinforced by the research provided. The clients reported adequate levels of health literacy, which could be skewed by the small group size. The clients also reported a strong personal feeling of failure, a distrust in the facility, high self-efficacy, low self-esteem, and a strong desire for increased self-advocacy. The group session did not produce any post-test data due to the high turnover of clients at NDI. Post-test data would be supplemental to proving the ability of group intervention to increase client motivation, self-esteem, and self-advocacy, but none could be collected. Additionally, the health literacy training implemented at NDI gained traction with the clinical directors and will be implemented into the framework of the site. The preliminary health literacy training for the adult population staff was well-received and contained a plethora of positive feedback. The staff noted that the ideas seemed simple enough to implement but also are supported by research to prove the necessity for implementation. Overall, the data collection, research compiled, and health literacy training implementation will supplement the site goal of successful community rehabilitation. Conclusion Across the 14-week span at NDI, I successfully complied and applied health literacy information into an adult group session, presented a health literacy training session, and advocated for the sustainability of the health literacy project implementation. Both the adult population staff and the clinical directs of NDI enthusiastically welcomed the health literacy program. The faculty benefit from the evidence-based health literacy project because the primary goal for the clients is successful community reintegration. The clinical directed reported a shift towards evidence-based assessments and intervention as a primary goal for the site. The project benefits all stakeholders involved by providing evidence, intervention planning and ideas, and effective training sessions to help the site meet the goals stated. The clinical directors at NDI welcomed the ideals of health literacy into the framework of the site and plan on integrating the training session into a future project for the site to complete. The feedback provided after the training session included negotiations with the site for creating an occupational therapy position at the site to continue the evidence-based assessment administration and interventions for the clients. The site genuinely wants an occupational therapist after reviewing and positively evaluating the impact of the work of the occupational therapy capstone students at the site. Overall, I learned professionalism, leadership, and advocacy skills while working at NDI. I was given the task of managing my own time, space, project, and day-to-day tasks with virtually no oversight. Professionalism played a large part in staying on task, taking responsibility for the work being completed, and maximizing the impact the health literacy project could have at NDI. I gained valuable leadership skills through leading an adult group and presenting to other healthcare professionals. Through the capstone project, I had to become a leader in health literacy to better facilitate the information to the other stakeholders at NDI. Finally, I learned advocacy skills for my self-worth and the worth of my profession. I had to advocate to other healthcare professionals to prove my worth to be able to interact with and advance the rehabilitation of the clients at NDI. I had to advocate for occupational therapy as a profession at a site that is vastly lacking the role. The experiences and skills gained while working at NDI will be vitally supplemental to becoming an expert future practitioner with the skills and responsivities to positively impact my future clients. References Allott, M., Sofra, T., O'Donnell, G., Hearne, J. L., & Naccarella, L. (2018). Building health literacy responsiveness in Melbourne's west: a systems approach. Australian Health Review, 42(1), 31-35. http://dx.doi.org.ezproxy.uindy.edu/10.1071/AH17059 Bayati, T., Dehghan, A., Bonyadi, F., & Bazrafkan, L. (2018). Investigating the effect of education on health literacy and its relation to health-promoting behaviors in health center. Journal of Education and Health Promotion, 7(1), 127. http://dx.doi.org.ezproxy.uindy.edu/10.4103/jehp.jehp_65_18 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Crowe, A., Mullen, P. R., & Littlewood, K. (2018). SelfStigma, Mental Health Literacy, and Health Outcomes in Integrated Care. Journal of Counseling & Development, 96(3), 267 277. https://doi.org/10.1002/jcad.12201 Fuller, J., Tapp, J., & Draycott, S. (2019). Are guilt and shame in male forensic patients associated with treatment motivation and readiness? Criminal Behaviour & Mental Health, 29(2), 111121. https://doi.org/10.1002/cbm.2105 Gibney, S., Bruton, L., Ryan, C., Doyle, G., & Rowlands, G. (2020). Increasing Health Literacy May Reduce Health Inequalities: Evidence from a National Population Survey in Ireland. International Journal of Environmental Research and Public Health, 17(16), 5891. http://dx.doi.org.ezproxy.uindy.edu/10.3390/ijerph17165891 Gudjonsson, G. H., Young, S., & Yates, M. (2007). Motivating mentally disordered offenders to change: Instruments for measuring patients' perception and motivation. Journal of Forensic Psychiatry & Psychology, 18(1), 7489. https://doi.org/10.1080/14789940601063261 Health Literacy. (2019, August 13). Heath Resources and Services Administration. Retrieved March 27, 2021, from https://www.hrsa.gov/about/organization/bureaus/ohe/healthliteracy/index.html Jonikas, J., Grey, D., Copeland, M., Razzano, L., Hamilton, M., Floyd, C., Hudson, W., & Cook, J. (2013). Improving propensity for patient self-advocacy through wellness recovery action planning: Results of a randomized controlled trial. Community Mental Health Journal, 49(3), 260269. https://doi.org/10.1007/s10597-011-9475-9 Kirsh, B., Martin, L., Hultqvist, J., & Eklund, M. (2019). Occupational Therapy Interventions in Mental Health: A Literature Review in Search of Evidence. Occupational Therapy in Mental Health, 35(2), 109156. https://doi.org/10.1080/0164212X.2019.1588832 Lee, S.-Y. D., Stucky, B. D., Lee, J. Y., Rozier, R. G., & Bender, D. E. (2010). Short Assessment of Health Literacy-Spanish and English: A comparable test of health literacy for Spanish and English speakers. Health Services Research, 45(4), 11051120. https://doi.org/10.1111/j.1475-6773.2010.01119.x Rosenberg, M. (1965). Rosenberg self-Esteem Scale. PsycTESTS Dataset. https://doi.org/10.1037/t01038-000 Schwarzer, R., & Jerusalem, M. (1995). General self-efficacy scale. PsycTESTS Dataset. https://doi.org/10.1037/t00393-000 Tay, J. L., Tay, Y. F., & Klainin-Yobas, P. (2018). Mental health literacy levels. Archives of Psychiatric Nursing, 32(5), 757763. https://doi.org/10.1016/j.apnu.2018.04.007 Vellar, L., Mastroianni, F., & Lambert, K., (2017). Embedding health literacy into health systems: a case study of a regional health service. Australian Health Review, 41(6), 621625. Appendix A Week DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) 1 Orientation Weekly Goal Objectives Tasks 1) Complete orientation to the site including mandatory employee training, introduction to staff, discussion capstone project with staff Meet with site mentor, other site personnel, and educate staff on capstone project idea and importance at the site Set up meeting with mentor to discuss project and timeline Finalize questions for needs assessment Determine key figures for project implementation Establish outcome assessment Finalize MOU 2) Complete needs assessment 2 Screening/Evaluation 1) Complete search for literature for data collection appropriate for client population Date complete 1-14 Introduction to staff Complete orientation paperwork Review assessments Find 10 relevant with faculty to determine assessment tool/interventions appropriateness for mental health population Complete relating to health searches on 3 different literacy sources to final Discuss research shadowing other articles faculty and plan sessions for Reach out to remainder of Jenny project including regarding psychology, planning for nursing, rehab shadowing aides, rec 1-21 3 4 Screening/Evaluation 1) Begin collecting information on current health literacy research, protocols, programs, that the site currently uses Implementation 1) Complete outline for evidencebased client centered health literacy group session with approval by faculty and added to schedule for following weeks 2) Complete review of assessment and select most appropriate for group sessions therapy, and adolescent population Reach out to current faculty members to collect health literacy information at NDI faculty around the facility Discuss health literacy with current therapists on different floors 1-28 Reach out to mentor regarding facility health literacy policies Reach out to head of department regarding health literacy Present group session outlines to faculty mentor and therapy department Create SWOT for assessments to compare Find time to place group sessions into client schedule Find room for group sessions Find therapist to co-lead session and complete site documentation for session Select specific assessments with site approval from mentor and therapy department 2-4 5 Implementation 1) Complete STOHFLA Motivation Assessment Scale in group session 2) Complete collection of site current health literacy knowledge and compare to current best practice 6 Implementation 1) Complete Rosenburg Self-Esteem Scale in group session 2) Complete literature review on importance of health literacy in mental health setting 3) Begin assessing health literacy of current faculty Co-lead session and plan group around collecting data and increasing motivation Provide handout for importance of increasing motivation Support importance of Compare session with information evidence collected from provided to faculty regarding therapy team health literacy on-site Find holes in current literature regarding health literacy used on site Co-lead session Provide and plan group handout for around collecting importance of data and increasing selfincreasing selfesteem esteem Support Compile and importance of complete final session with literature review evidence provided to therapy team Reach out to faculty that are willing to participate from variety of departments Provide literature regarding health literacy of healthcare professions to analyze current site 2-11 2-18 7 Implementation 1) Lead group session on health literacy part 1 Outline specific health literacy program and present first part to therapy team and clients during this week 8 Implementation 1) Lead group session on health literacy part 2 Continue health literacy session with same clients from prior week 2) Analyze health literacy scores of staff 9 Implementation 10 Implementation 11 Implementation Compare staff scores to current literature 1) Lead group session on health literacy part 3 1) Collect feedback from clients and faculty regarding health literacy group sessions Continue final part of health literacy session with same client from prior week Update outline of health literacy sessions 1) Collect discharge score from clients who completed health Complete motivation and self-esteem scores from clients posthealth literacy groups Ask for 2-25 feedback from faculty regarding my performance with leading group session and find 2 areas to improve upon Ask for 3-4 feedback regarding session 2 of health literacy Implement scores into health literacy program for staff during final dissemination Ask for 3-11 feedback regarding all the health literacy sessions Compile 3-18 feedback and build comprehensive health literacy groups for faculty to implement moving forward Complete 3-25 group sessions and analyze impact from health literacy groups on clients affect 12 Discontinuation 13 Dissemination 14 Dissemination literacy groups 1) Analyze all feedback and health literacy information 2) Reflect on my performance and my group sessions 1) Plan time, location, and inform personnel regarding final dissemination 1) Finish disseminating project to appropriate faculty 2) Site implements project into facility standards and client intervention pool 3) Site implements Compile information into final client and faculty health literacy programs Gain feedback from faculty regarding skill and areas I need to continue to improve to become an effective therapist for working with mental health population Reach out to mentor, therapists, nurses, and department heads Create example health literacy ambassador role to present to site as potential solution to low health literacy Create master outline for health literacy groups and importance 4-1 Add discharge scores from clients Add scores from current faculty Complete presentation to present to faculty 4-8 Disseminate and go through discharge process from site 4-15 Thank everyone on staff health literacy assessment into facility standards  ...

... 1 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children Elizabeth Harris May, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kristina Watkins, OTD, MOT, OTR 2 A Capstone Project Entitled Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Elizabeth Harris OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 3 Abstract This study exists to create a structured large motor program for children and a balance program for the women at Heart Change Ministries to improve occupational performance. Child development education was provided to 15 staff members via infographics. A pre and post-test perceived knowledge survey was administered before and after education. Results indicated a 35% increase in perceived knowledge. Six children aged three to five were evaluated using the Single Leg Balance Test. Three women were assessed with the Static Balance Test. Both of these assessments were completed as pre and post-tests. The children completed the exercise program one day per week and the women completed the balance program two days per week, each for eight weeks. All the children and women showed improvement in balance scores after program implementation. This data may provide a reference for incorporating similar programs with this population to improve occupational performance in the future. Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 4 Introduction Heart Change is a non-profit Christian organization that desires to come alongside women, with or without children, in discipleship to create permanent change in their lives. Most of the women have experienced homelessness, abused substances, currently live in unstable/unsafe environments, and have been physically/emotionally abused by a partner or as children. The mission of Heart Change Ministries is to serve marginalized women in Indianapolis with the gospel of grace, equipping them to live as God intended; as women, mothers, and members of their communities (Heart Change Ministries, 2021, Our Mission section). While the women are being discipled, Heart Change provides a developmental preschool for their children. After completing a needs assessment with Heart Change, it became clear that the children enrolled displayed various developmental delays due to their circumstances. The Doctoral Capstone Experience (DCE) project consisted of creating a structured large motor program for the children. Teachers and volunteers were trained and educated on how to sustain the program by implementing it on their own. Another aspect of the project focused on improving the womens balance skills. Heart Change staff members received education through infographics on Occupational Therapy and developmental principles to implement in the classroom. The purpose of the program and all the interventions was to improve the occupational performance and wellness of the women and children at Heart Change so they can thrive and be the amazing women and children that God has created them to be. Throughout this paper the reader will learn about the needs, values, and mission of Heart Change Ministries; understand the Occupational Therapy theory and model that guided and justified the DCE project; and explore the project design, implementation, and outcomes. Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 5 Background As previously noted, Heart Change provides services to women in crisis which often includes homeless populations. In 2019, Indiana had 544 family households that were homeless (USICH, 2019). One in thirty children living in the United States experiences homelessness every year (American Institutes of Research, 2014). Children living in poverty are at risk for cognitive, social, physical, and developmental delays as they are less frequently stimulated in these areas through their parents (Cates et al., 2016). While the mothers are focused on finding ways to provide for their family, they neglect to stimulate their children in a way that would promote development. The staff at Heart Change had concerns that the children they serve demonstrated various developmental delays. Researchers have found poor developmental outcomes in children growing up in poverty and hypothesize that as children grow older and are more exposed to the harsh circumstances of poverty, the more developmental delays arise (Coll et al., 1998). In response to this, the researcher completed a developmental screening on each of the children ranging in age from one to three to report any suspicion of developmental delay. Schultz and Tyminski (2018) reported children that experience homelessness have decreased opportunities to participate in developmentally appropriate activities, such as play, which can negatively impact the childs cognitive, social-emotional, and physical development. As indicated in the needs assessment, this finding was also true for the children at Heart Change. There was a need for a structured large motor time, including improvement in core strength and balance. Ruiz-Esteban et al. (2020) implemented a structured large gross motor exercise program for a portion of preschoolers while a comparison group participated in free play. In the study, the structured large gross motor exercise group presented with significantly higher arm and leg coordination values when compared with the free playgroup (Ruiz-Estaban, 2020). Researchers Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 6 found that, structured physical activity education is better educational methodology than free play to achieve adequate motor development in preschool children (Ruiz-Estaban, p.1, 2020). At the beginning of the project, the thirty minutes of large motor time was spent in free play. The goal of the project was to engage the children aged three to five in a structured large motor exercise session for a portion of their large motor time. The results and methods of this intervention were different as the children in the Ruiz-Estaban study were all typically developing, and the children at Heart Change demonstrated multiple areas of developmental delay. Through observation and the needs assessment, it was found that some of the children at Heart Change demonstrated a lack of body awareness and decreased balance. Chang et al. (2020) researched a 6-week program for a physical warm-up and balance exercises with school-aged children. The researchers found that dynamic whole-body movement intervention produced improved balance results. However, the main finding from the study, indicated that children can increase their core strength and endurance over time, enabling them to maintain postural control, reduce inefficiency in their movement patterns, and improve balance stabilization (Chang et al., p.8, 2020). This information motivated the researcher to incorporate core strengthening exercises into the structured large motor program. The Alternate Path (AP) course was created a couple years ago when three of the women were not able to cognitively participate in the courses because they could not read, sustain attention, or demonstrate appropriate behavior in class. During evaluation a concern for the womens balance in the AP class surfaced. After completing the needs assessment, it was found that many of the women are unstable on their feet and have a fear of falling. In response to this the researcher completed a balance assessment with the women, introduced a balance and Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 7 stretching program, and reassessed at the end of the semester to note their progress. Hinsey et al. (2016) completed an 8-week program that merged Yoga and Occupational Therapy (OT) intervention with patients that have experienced falls or have a fear of falling. While the size of participants was small, results indicated that merging yoga with OT balance interventions improved balance, confidence, emotional, and cognitive variables (Hinsey et al., 2016). Another portion of this project included educating the classroom teachers and volunteers about various OT domains and providing a background on child development principles. This would ensure that the teachers would see the benefit of the project interventions and would continue to implement them after the project ceased. To assess their perceived knowledge of the OT principles, a pre and post programming Likert scale survey was created. This survey was modelled after Heward et al. (2021) who reported on their project that provided the intervention of education to caregivers of patients with dementia. These researchers conducted a pre and post programming survey where they asked their participants to rate their knowledge and comfortability before and after intervention (Heward et al., 2021). The teachers and volunteers participated in the survey at the beginning of the semester to assess their perceived knowledge of information before providing education and took the same survey at the end of the semester after education, with hopes of their perceived knowledge increasing. Throughout the semester, infographics were created by the student with information and potential classroom activities that would promote development in each of the OT principles. The program implementation for both the women and children at this site included education to the teachers and volunteers so they can implement the simple interventions long term to continue promoting development for all. All of these areas of program implementation Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 8 were identified by the stakeholders as a need for improvement for the children and women at Heart Change. Model and Theory The Person Environment Occupation Performance (PEOP) model guided and justified the work of this Doctoral Capstone Experience. The first component of this model focuses on the person, and this would be a crucial aspect for Heart Change as they require the women to devote themselves to a spiritual journey. The second component is the environment which includes the individuals extrinsic factors and impacts most of the women and children at Heart Change as most come from abusive homes, experience homelessness, live in unstable environments, and experience poor socialization (Cole & Tufano, 2008). The third component is occupation, and for the project this will include the women learning to work, balance, and learn while the children are learning to play and promote their gross motor development. The fourth component is performance, which is the individual participating in the task or occupation (Cole & Tufano, 2008). The women practiced working and improving balance performance while the the children completed gross motor exercises to improve their performance in play and learning. Both groups will attempt to create healthy relationships with others. Finally, all components of the model are intersected and produce the individuals occupational performance (Cole & Tufano, 2008). The goal for the project was working towards restoring occupational balance, or creating successful occupational performance, to the women and children at Heart Change through the programs that were implemented. The theory guided this project was Lasletts Third Age Theory, which explains the four ages of life that each individual goes through. The first age appled to the children at Heart Change as it is the age for dependence and education (Cole & Tufano, 2008). The second age Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 9 applied to the women at Heart Change as it is the age for independence and maturity while attempting to find their place in the working world to provide for their family (Cole & Tufano, 2008). The third applied to some of the women as they experience disability in their everyday lives in terms of decreased literacy and balance, while attempting to find self-fulfillment in their lives (Cole & Tufano, 2008). The fourth age represents the end of life and returning to a state of dependency (Cole & Tufano, 2008). While this does not apply directly to the women, they could be caring for a loved one at this age or begin to prepare for these ages. When using this theory to guide intervention, it was important to consider the womens first age and the impact it had on their lives considering a majority of women come from abusive homes. These experiences in their first age greatly influence the way they behave and develop now in the second age. Project After completing the needs assessment, interviewing stakeholders, and observing the programming of Heart Change, attainable goals were created to promote the occupational engagement of the women and children. The outcome measure chosen to assess the childrens large motor and balance skills was the Single Leg Stance balance assessment. The children completed the assessment before and after the structured large motor program was implemented to test the effectiveness of the program. This outcome measure compares a given childs performance to the performance of other children the same age to get norm values. This measure was necessary for the project to identify potential developmental delays in children so they could receive attention or be referred to therapy services. The outcome measure chosen to assess the balance of the women in the AP class was the Static Balance Test. This outcome measure was chosen to ensure participation due to the simple instructions that the women in this course could Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 10 easily understand. The women completed the test before and after the balance program implementation to analyze their progress and test the effectiveness of the program. To assess the perceived knowledge of the classroom teachers and volunteers on OT and development principles, the researcher created a pre and post-programming survey that consisted of a 4-point Likert scale and was modelled after Heward et al. (2021). The pre-test was completed by 15 of the teachers and volunteers on Google Forms the 2nd week of the project and the post test was completed during the 13th week after education had been provided. After gaining evaluation data and information from the outcome measurements, extensive research was completed to ensure all OT intervention was evidence-based and client centered. A structured large motor program was created for the children aged three to five to complete before going to the large motor room and was modelled after Chang et al. (2020). A similar program was created for the children aged 1-2; however, this age did not tolerate these sessions well due to decreased attention and maturity. Client-centered intervention was implemented to promote development with these children throughout the project. A balance program was created to challenge the women in a safe manner and to create a routine of exercise and moving their bodies. Many of the women could not read, so a handout with visuals was created as a home exercise program for the women to take home and complete with safety precautions in place. Various balance exercises were implemented with the women in the AP class throughout the semester to boost confidence and improve balance in their everyday lives. This area of the project was the most challenging as the women were skeptical of the exercises, and one of the women was very fearful of falling. However, after building a rapport with the women, they were more willing to participate in the activities and showed great improvement in their balance skills and confidence. Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 11 Educational infographics were created and provided to the teachers and volunteers of the childrens classrooms to improve their confidence and understanding of the different OT and development principles. The infographics also included potential activities the teachers could implement to promote development within the classroom. The participants greatly enjoyed learning about these different topics and implemented some the suggested activities throughout the duration of the project. Project Outcomes Six of the children aged three to five completed the Single Leg Balance test prior to completing the structured large motor program. Each child was required to balance themselves on their right foot and then the left foot for as long as they could, stopping the test at 10 seconds. The children participated in the program one day per week for eight weeks. The children completed the Single Leg Balance test again after program implementation. Three of the women completed the Static Balance Test before and after the balance and stretching program was implemented. As shown in Table 2, the balance stance difficulty progresses as the test continues. The women are asked to hold each stance for as long as they can, stopping each stance at 10 seconds. The women participated in the program two days per week for eight weeks. Fifteen of the teachers and volunteers completed the pre and post programming survey based on their perceived knowledge of OT and development principles before and after education was provided. The survey was a Likert scale of options ranging from no knowledge (1) to very well informed (4). Educational infographics were created by student informing staff on development and examples of activities that could be implemented within the classrooms to promote development. Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 12 Table 1 includes norm scores for each age of the child on the Single Leg Balance Test. Four of the children demonstrated a risk for developmental delay prior to program implementation based on the normal score for their age. After program implementation, none of the children demonstrated a risk for developmental delay. All of the children demonstrated varying amounts of positive % change as shown in Table 1. The women in the Alternate Path course demonstrated improvements in each category of the Static Balance test post test scores compared with the pre-test data. All the women demonstrated varying amounts of positive % change as seen in Table 2. The teachers and volunteers results for the pre-programming survey indicated a total of 60% perceived knowledge of the OT principles and developmental topics before education, as indicated in Table 3. After this set of participants received education on OT principles through the use of infographics, the post programming survey results increased to a total of 95% perceived knowledge. All topics yielded an increase of median perceived knowledge score at the pre-programming survey to the median of the post programming survey after the teachers and volunteers received education on OT principles through use of original infographics. There was a total 35% increase in perceived knowledge noted in the post test scores compared with the pre-test scores as seen in Table 3. Table 1 Single Leg Balance Test Scores for Children Aged 3-5 Age 3y, 6mo R Pre- L Pre- Score Score (sec) (sec) 3 5 Norm* (sec) 2-3 R Post L Post % % Score Score Change Change (sec) (sec) R L 5 8 +66% +60% Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 3y, 9mo 3 3 2-5 3 6 0% +100% 4y, 1mo 6 3 4-8* 6 5 0% +66% 4y, 2mo 2 2 4-8* 10 5 +300% +150% 4y, 3mo 2 4 4-8* 6 5 +400% +150% 4 4 4-8 8 10 +100% +150% 6 8 10* 8 8 +25% 0% 4 y, 4mo 5y, 3mo Note. * Indicates a score that does not meet the normal development score for children at the specific age, indicating a developmental delay. Table 2 Static Balance Test Scores for Women in AP Class Test Description Client 1 Client 1 Client 2 Client 2 Client 3 Client 3 Pre-Test Post Test Pre-Test Post Test Pre-Test Post Test (sec) (sec) (sec) (sec) (sec) (sec) 10 10 10 10 10 10 Stand with Feet SideBy-Side 13 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 14 Place Instep of Foot to Touch Big 1 4 10 10 10 10 1 2 6 10 4 10 1 1 7 10 10 10 Toe of Other Foot Tandem Stand Stand on 1 Foot Total % Change 30% 33% 25% Table 3 Pre and Post Programming Survey Data on Perceived Knowledge Pre-programming Post programming % Change in Average Average Perceived Knowledge 2 3 +50% 2 3 +50% Crossing Midline 2 3 +50% Bilateral Integration 1 3 +200% Proprioception 2 3 +50% Vestibular System 2 3 +50% Heavy Work 1 3 +200% OT Principle/Topic Occupational Therapy Developmental Milestones Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children Executive Functioning 2 3 +50% Sensory System 2 3 +50% 2 3 +50% 3 4 +33% 3 4 +33% 60% 95% +35% Upper Extremity Strengthening Fine Motor Coordination Gross Motor Coordination Total % Perceived Knowledge Score 15 Summary In summary, the children in this population are prone to developmental delay due to their circumstances of homelessness, lack of developmentally stimulating opportunities, and poverty. After evaluation of the children was completed, it was found that four out of seven children demonstrated a developmental delay in their balance. To address this need, a structured large motor exercise program was created that challenged balance and core strength. After implementation, the same evaluation was completed and none of the children demonstrated a developmental delay and all of their scores improved by varying amounts. Women in the AP course demonstrated poor balance and confidence at the start of the project. A balance and stretching exercise program was created and given to the women to take home to practice. After implementation of this program two days per week, all of the womens scores improved by varying amounts, along with their confidence and desire to improve their balance. Lastly, the Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 16 teachers and volunteers had a desire to learn more about Occupational Therapy and child development principles to best serve the children enrolled in Heart Change. At the beginning of the project, teachers and volunteers completed a pre-programming Likert scale perceived knowledge survey on various OT and development topics. Infographics were created and distributed by the student throughout the semester, and when the same teachers and volunteers took the post-programming survey, all of their perceived knowledge improved by varying amounts. Conclusion An eight-week structured large motor exercise program improved the balance and core strength of the children that participated in the program. These children enjoyed and welcomed the challenge to move their bodies in ways they never have before. They were overjoyed to find their scores had improved since the beginning of the program. An eight-week balance and stretching program improved the balance and confidence of the women that participated. After the initial hardship of getting the women to buy-in to the program, they grew fond of working on their bodies and even practicing the programs in their own homes. The improved results instilled confidence in the women that was positive for their mental health and will hopefully improve their occupational wellness. It has been communicated to Heart Change that these programs should continue with the women and children to promote improvement. Training has been completed with the teachers and staff to do so. The classroom teachers and volunteers interacted well with the infographics that were provided, such as asking questions and implementing some of the activities within the classroom. Their perceived knowledge improved by the end of the project and they were thrilled to have resources on child development. Dissemination was completed with the site, which consisted of Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 17 sharing results, observations, resources, and suggestions for specific women and children in the future. Heart Change does not currently employ an Occupational Therapist, so the site benefitted from a profession representative with new ideas and fresh eyes to each individual and situation from a developmental and occupational frame of reference. The value of the effect size in the study indicates that data should be taken with caution due to the small sample sizes. Program implementation and data gathering should be taken with caution due to absences throughout the semester and inconsistent schedules for each of the women and children due to the nature setting. Behaviors and setting specific complications should require caution with data as well as there are many underlying factors that could cause poor scores. Future research should investigate long-term effects of these programs on a larger population. Occupational Therapy has a place within the homeless population and should be further investigated in the future. Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 18 References American Institutes for Research. (2014). Americas youngest outcasts: A report card on child homelessness. Retrieved from https://www.air.org/sites/default/ files/downloads/report/Americas-Youngest-Outcasts-Child-Homeless- ness-Nov2014.pdf Cates, C. B., Weisleder, A., & Mendelsohn, A. L. (2016). Mitigating the Effects of Family Poverty on Early Child Development through Parenting Interventions in Primary Care. Academic Pediatrics, 16(3 Suppl), S112S120. https://doi.org/10.1016/j.acap.2015.12.015 Chang, N.-J., Tsai, I.-H., Lee, C.-L., & Liang, C.-H. (2020). Effect of a Six-Week Core Conditioning as a Warm-Up Exercise in Physical Education Classes on Physical Fitness, Movement Capability, and Balance in School-Aged Children. International Journal of Environmental Research and Public Health, 17(15). https://doi.org/10.3390/ijerph17155517 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Coll, C. G., Buckner, J. C., Brooks, M. G., Weinreb, L. F., & Bassuk, E. L. (1998). The Developmental Status and Adaptive Behavior of Homeless and Low-Income Housed Infants and Toddlers. American Journal of Public Health, 88(9), 13711374. https://doi.org/10.2105/AJPH.88.9.1371 Heart Change Ministries. (2021). Discipleship for women and their children. http://www.heartchangeindy.org Heward, M., Board, M., Spriggs, A., Emerson, L., & Murphy, J. (2021). Impact of DEALTS2 education intervention on trainer dementia knowledge and confidence to utilise Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children innovative training approaches: A national pre-test post-test survey. Nurse Education Today, 97, N.PAG. https://doi.org/10.1016/j.nedt.2020.104694 Hinsey, K., Bolster, R., Willis, L., Schmid, A., Van Puymbroeck, M., Tracy, B., & Portz, J. (2016). Merging yoga and occupational therapy to improve balance and fall risk factor management: A pilot study. American Journal of Occupational Therapy, 70(1). https://doi.org/10.5014/ajot.2016.70S1-RP103F Ruiz-Esteban, C., Terry Andrs, J., Mndez, I., & Morales, . (2020). Analysis of Motor Intervention Program on the Development of Gross Motor Skills in Preschoolers. International Journal of Environmental Research and Public Health, 17(13). https://doi.org/10.3390/ijerph17134891 Schultz, W., & Tyminski, Q. (2018). Community-built occupational therapy services for those who are homeless. American Occupational Therapy Association. CE-1-CE9. United States Interagency Council on Homelessness. (2019). Indiana Homelessness Statistics. USICH. https://www.usich.gov/homelessness-statistics/in/ 19 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children Appendix Doctoral Capstone Experience Weekly Planning Guide 20 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children DCE Stage (orientation, screening/evalu ation, Week implementation, discontinuation, dissemination) 1 Orientation Weekly Goal 1. Complete orientation by the end of week 1 Objectives Meet with site mentor, classroom teachers, other site personnel, and volunteers to introduce myself and educate them on why I am here/what I will be doing for the 14 weeks. Document supervision plan and update MOU with site mentor Screening Evaluation 2. Complete Needs Assessment by the end of week 1 Understand the work environment, where to park, dress code, and complete training. Finalize questions for the needs assessment 2 Screening/Eval uation 1. Prepare to administer screening tool to the children Study the Denver 2 & Single Leg Balance test Research and observe the site to find out what Tasks 21 Date comp lete Set up meetings with key personnel 1/10 Update goals on MOU 1/13 Meet with site mentor and faculty mentor to go over goals 1/14 Ensure that all paperwork and training for orientation is complete 1/13 Determine who to 1/10 meet with and what questions to ask Talk to the 1/13 teachers about their needs, the children in their classroom, and what would be most beneficial Figure out how to 1/17 score the Denver 2 & Single leg balance test Gather supplies at 1/19 the site for the Denver 2 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 2. Find 12 education topics topics would be most beneficial for the teachers and volunteers in each of the classrooms 3. Make 1 educational sheet for newsletter on crossing midline Finalize and submit MOU with signatures 4. Outcome Measure 3 Screening/Eval uation Research and observe vision assessments to evaluate the women in the AP class Calculate chronological ages for the children that I am completing the Denver 2 with 1/18 Create and send educational sheet for newsletter to Abby by Friday 1/18 Meet with site mentor to discuss progress 1/18 Submit MOU 1/17 Research how to Create outcome measure create an outcome measure 1. Screen the children ages 1-2 using the Denver 2 Start screening in the 1-2 classroom with the Denver 2 2. Assess the women in the AP course for vision and literacy Assess women with vision assessment tool in the AP class 22 1/21 Create list of topics for newsletter 1/17 Find vision assessments Interpret results of the Denver 2 screening 1/18 Interpret whether the difficulty reading is due to vision, cognition, or literacy. 1/27 1/27 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 3. Assess Observe moms ergonomics while soap of women making while soap making 4. Make 1 newsletter on Bilateral Integration 4 Screening/Eval uation 1. Evaluate the balance of the women in the AP class Research and utilize assessment for balance that is appropriate 2. Evaluate children in the 3-5 classroom on the Single Leg Balance Test Implementation 3. Create educational binder for soap making Research ergonomics for soap making body safety 23 Start to research ergonomic interventions for the moms. 1/25 Create and send educational sheet for newsletter to Abby by Friday 1/25 Meet with site mentor to discuss progress 1/28 Send outcome measure to teachers/voluntee rs Complete assessment and interpret results 1/25 1/31 Research balance interventions that are appropriate 2/2 Evaluate 3-5 classroom 1/31 Start creating ergonomic resources 2/3 Create and send educational sheet 2/4 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 4. Make 1 Newsletter on Propriocept ion 5 Implementation Research large motor interventions and milestones for newsletter to Abby by Friday Meet with site mentor to discuss progress 2/4 Research large gross motor interventions that are appropriate for each child Work with each child and the classes as a whole during large gross motor time 2/9 2. Continue creating educational binder for soap making Research ergonomics for soap making body safety Continue creating 2/8 ergonomic binder 3. Start creating vision resources for teacher Research vision adaptive tools for the women Start creating 2/9 resource for teachers on vision adaptive tools 5. Continue Research on large gross motor program 1. Implement large gross motor interventio ns with children 4. Make 1 Newsletter on Vestibular Input 6 Implementation 24 1. Research handwritin Research handwriting Create and send educational sheet for newsletter to Abby by Friday 2/10 Meet with site mentor to discuss progress Work with each child and the 2/11 2/14 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children g interventio ns to implement with the children interventions that are appropriate for each child Continue to 2. Finish research vision vision adaptive tools resources for teachers Implementation classes as a whole during arts and craft time Set up a time to train the AP class teachers and educate them on vision adaptive tools 2/14 Complete 2/16 training with the teachers on vision 3. Provide teacher vision training 7 25 4. Start balance resources for teachers Research balance interventions that are appropriate for the women Begin working with women to improve balance and continue assessment 2/16 5. Make 1 Newsletter Infographic on Executive function Research executive function interventions Create and send educational sheet for newsletter to Abby by Friday 2/17 Meet with site mentor to discuss progress 2/18 6. Create visual schedules for classrooms Research ageappropriate visual schedules and compile resources Take pictures for visual schedule, talk to teachers about the stations they want on the visual schedule, copy, laminate, cut Create resource for student and for teachers use 2/15 1. Create Research large motor structured structured 2/21 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children exercise interventions for program large gross motor for children Implementation to lead exercise program 2. Finish balance HEP and stretching HEP for women in the AP class Continue research on balance interventions Create resource for student and teachers use to lead balance intervention, and for the women to take home 3. Create resource for childrens handwritin g interventio n program Research and create resources for handwriting interventions Type all names of 2/24 students, purchase laminated folder, insert names with folders Set up a time to meet with site mentor to discuss and review midterm evaluation Meet with site mentor to discuss progress 2/25 Set up a time to meet with the classroom teachers 2/28 Provide training and resources for the structured large motor exercise program 3/1 4. Midterm evaluation 8 26 1. Train Finish research teachers of and resources to the give to teachers childrens classroom on structured large motor exercise program to complete with classes and 2/23 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 27 implement program 2. Provide teacher balance training 3. Finish ergonomic resources for the soap making leaders Continue to research ergonomic safety and finish resources 4. Make 1 Newsletter on Sensory Developme nt 9 Implementation Set up a time to train teachers of the AP classroom to go over balance intervention 2/28 Train teachers of the AP class on simple balance interventions and research 3/2 Finish and print presentation materials 3/1 Create and send educational sheet for newsletter to Abby by Friday 3/3 5. Review midterm evaluation with site mentor Meet with site mentor to discuss midterm evaluation 1. Train soap Finish resources making for teachers on leaders and ergonomics employees in ergonomics Set up a time to 3/7 meet with the soap making leaders to go over resources Train the soap leaders and makers on the 3/3 3/10 Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 28 research, intervention, and safe ergonomics with soap making 10 Implementation 2. Train classroom teachers on the handwritin g interventio n and program resources created Set up time to meet with teachers to discuss handwriting intervention 3/7 Train teachers on handwriting program 3/9 3. Make 1 Newsletter on BUE strengtheni ng Create and send educational sheet for newsletter to Abby by Friday 3/10 Meet with site mentor to discuss progress 3/11 4. Implement balance HEP with women in the AP class 1. Reassess Adaptive vision tools for women in the AP course Print balance HEP for the women 3/7 Ensure women are using adaptive tools correctly and are helpful Order more vision adaptive tools 3/13 Take feedback from the teachers and start to research and adjust program to fit needs Set up a time to get feedback from the classroom teachers 3/14 2. Gather feedback on the structured large gross motor Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children exercise program and handwritin g program 11 Discontinuation Implementation 12 Discontinuation Have meeting to get feedback from teachers 29 3/15 3. Implement stretching HEP with women in the AP class Finish stretching HEP resource 1. Re-assess children on the Single Leg Balance Test Score the children Work with each of the children individually to Compare the complete the outcome measure assessment scores from week 3 to the scores Compile data and from week 11 find out improvement based on outcome measure 3/21 & 3/23 2. Continue to modify the childrens large and fine motor interventio ns/program based on results Adjust and continue research on appropriate interventions and resources available for First Steps if required Find out how to reach out to First steps if required 3/22 Submit referral for 1 child to First Steps 3/24 1. Finish reevaluation with the children Print Stretching HEPs for women to take home 3/14 Meet with site mentor to discuss progress 3/18 3/22 Meet with site 3/25 mentor to discuss progress Score the Compile data and 3/28 children find out improvement Compare the based on outcome outcome measure measure scores from week Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 30 11 to the scores from week 3 13 Implementation 2. Continue to modify the childrens large and fine motor interventio ns/program based on results Adjust and continue research on appropriate interventions and resources available for First Steps if required Set up time to meet with classroom teachers to discuss the childs progress and what the scores indicate 3/29 Implementation 3. Continue to modify the womens balance interventio ns/program based on results 1. Finalize and clean data Research modifications for balance program Modify and work 1:1 with women in the AP class 3/29 Meet with site mentor to discuss progress 3/31 Gather all data, clean data, make tables clear for dissemination and scholarly report Meet with faculty mentor to discuss data and tables 4/6 Edit tables and data 4/6 Create PowerPoint presentation for site, add in all data and observations Create and finalize PowerPoint 4/5 Edit report based on faculty mentors feedback and how project has changed Access faculty 4/7 mentor comments and make edits to report Discontinuation 2. Create and finalize site presentatio n 3. Edit Scholarly Report Development of Structured Large Motor and Balance Programs to Improve Occupational Performance for Women and Children 4. Send post programmi ng perceived knowledge survey to staff 14 Dissemination 31 Create and send out post programming survey to all volunteers and teachers that participated in the preprogramming survey Gather data, send reminder emails to fill out survey Gather emails, previous data, send out survey 4/4 Meet with site mentor to discuss progress 4/8 Finalize data, add to tables to disseminate to staff 4/11 Confirm time to disseminate to staff and volunteers Give presentation to Heart Change personnel 4/15 3. Complete Set up a time to Site mentor meet with Site evaluation mentor Meet with site mentor to discuss the capstone, final evaluation, and closing remarks. 4/14 1. Finalize data for post programmi ng perceived knowledge survey 2. Disseminat e project to site  ...

... Virtual Group Occupational Therapy for Homebound Veterans and Their Caregivers Kylie S. Harper May 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alissia Garabrant, OTR A Capstone Project Entitled Virtual Group Occupational Therapy for Homebound Veterans and Their Caregivers Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kylie S. Harper Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 1 Abstract Homebound older adults are at an increased risk for depression, anxiety, and loneliness with limited opportunities to access the community and social gatherings. Telehealth increases access to care while eliminating transportation time and costs. Group therapy maximizes the opportunities for social participation and social support to reduce feelings of loneliness. This study aimed to determine if virtual group therapy is a feasible and effective method to provide occupational therapy services to local homebound veterans. Two veterans receiving home-based primary care services and one caregiver consistently attended a virtual group occupational therapy pilot program targeting health management and social participation at the Cincinnati VA. Qualitative and quantitative analysis indicated positive outcomes related to social participation, physical activity, and caregiver support following participation in the pilot program. The results support virtual group therapy as an effective method for client-centered occupation-based interventions for homebound older adults and their caregivers. Keywords: telehealth, group therapy, homebound, veteran, older adult, caregiver, health promotion, social participation VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 2 Virtual Group Occupational Therapy for Homebound Veterans and Their Caregivers Approximately 75% of older adults live with multiple chronic conditions contributing to decreased health-related quality of life (QOL) and reduced occupational performance (Berger et al., 2018). Leaving home may not be possible, safe, or practical to engage in occupations for older adults with complex medical needs, resulting in a homebound lifestyle. Homebound older adults are at an increased risk for depression resulting in increased feelings of loneliness and decreased social participation and activity engagement (Garabrant & Liu, 2021). Limited engagement in occupation and social isolation can increase feelings of depression, loneliness, and anxiety (Garabrant & Liu, 2021; Xiang & Brooks, 2017). As America's most extensive integrated health care system, the Veterans Health Administration (VHA) prioritizes quality and prompt services to its nine million enrolled Veterans (Veterans Health Administration, n.d.). The Department of Veterans Affairs is a trailblazer in home-based primary care (HBPC), running the most extensive HBPC program in the U.S., serving approximately 59,000 homebound veterans annually (Schuchman et al., 2018). The HBPC program provides interdisciplinary services to veterans and their families through in-home and virtual visits (J. Kennedy, personal communication, May 2021). The Cincinnati VA has six HBPC teams with three total occupational therapists (J. Kennedy, personal communication, May 2021). Occupational therapists in the HBPC program evaluate veterans activities of daily living (ADLs), instrumental activities of daily living (IADLs), and functional and community mobility (J. Kennedy, personal communication, May 2021). Veterans within HBPC have complex medical needs that challenge their ability to leave their homes safely; therefore, interdisciplinary care team members provide in-home visits to ensure fair and equal access to healthcare. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 3 This program development project involved a collaborative effort between the HBPC occupational therapists and the program developer to develop a virtual group occupational therapy class to promote social participation and health management for homebound veterans. Occupational therapists support individuals, groups, and populations in maximizing their participation in life through engagement in occupation and health promotion (AOTA, 2020). Evidence supports group occupational therapy interventions as an effective method to promote wellness in older adults (OBrien & Solomon, 2021). Furthermore, participants of group occupational therapy interventions found positive meaning and enjoyment through involvement in the group (OBrien & Solomon, 2021). The mission of the Cincinnati VAMC is to offer options to timely, quality services for Veterans through care and respect for one's physical, psychological, and spiritual health (VA Cincinnati Health Care, n.d.). This paper will discuss how the program development project supports this mission through a virtual group occupational therapy class. Background Population: Homebound Older Adults Older adults are at an increased risk for developing chronic conditions that limit their ability to engage in occupations (Berger et al., 2018). The incidence of multiple chronic conditions can make it challenging for individuals to leave their homes to safely participate in daily activities (Berger et al., 2018). Medicare considers individuals homebound if they meet the following two criteria: 1) Rely on the help of another person or medical equipment to leave their home, or their doctor believes their health or illness could worsen if they leave their home. And 2) have difficulty leaving their home and typically cannot do so (Medicare Interactive, 2017). According to Reckrey et al. (2020), there are an estimated 2 million older adults in the United VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 4 States who never or rarely leave the home, with an additional 5.3 million older adults who leave home only with assistance or with significant difficulty (p 2). Occupational disengagement and a sedentary lifestyle can exacerbate illness and introduce new medical issues, such as depression, obesity, and chronic pain (Park et al., 2020). Approximately 43.9% of homebound adults experience depression (Xiang & Brooks, 2017), resulting in increased feelings of loneliness and decreased social participation and activity engagement (Garabrant & Liu, 2021). Occupational Therapy and Home-Based Primary Care Cheng et al. (2020) emphasize improving healthcare delivery for homebound individuals through home-based primary care (HBPC). Several studies have shown HBPC to dramatically improve the quality of life of homebound individuals and their caregivers (Schuchman et al., 2018). The VA HBPC program is the largest in the nation, with over 300 HBPC teams (Schuchman et al., 2018). The VA HBPC program offers interdisciplinary team-based in-home support for veterans with severe chronic diseases and disabling conditions that interfere with daily activities and overall health and wellness (Schuchman et al., 2020; HBPC - Geriatrics and Extended Care, n.d.). Occupational therapists are essential members of the HBPC interdisciplinary team, offering skilled insights into the veterans' occupational performance within the home context (AOTA, 2020). Occupational therapy aims to support individuals in life through engagement in occupation (AOTA, 2020). Wilcock and Hocking (2015) support the benefit of engagement in occupation to improve a persons health and wellbeing. Due to the nature of primary care, HBPC occupational therapists see their patients quarterly or as needed for evaluation and reevaluation of occupational performance within the home setting (J. Kennedy, personal communication, May 2021). Garabrant & Liu (2021) suggest that occupational therapists consider providing VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 5 interventions to facilitate social participation and activity engagement when working with rural homebound older adults with depression. Furthermore, Berger et al. (2018) encourage healthcare practitioners to provide health promotion, maintenance, and management interventions to address the adverse effects of chronic conditions. Occupational therapists foster the skills to appropriately adapt, modify, and grade the intervention to maximize participation within the home environment and virtual context (AOTA, 2020). Telehealth Telehealth is an emerging service delivery model that has become increasingly popular in response to the COVID-19 pandemic. Sclarsky and Kumar (2021) support telehealth as an effective delivery model for occupational therapy for community-dwelling adults. Additionally, telehealth services increased patient satisfaction rates in rural communities by improving access to healthcare services while reducing transportation and therapy costs, according to Patterson et al. (2021). HBPC providers at the Cincinnati VA can provide virtual home visits using VA Video Connect (VVC) (J. Kennedy, personal communication, May 2021). VVC is a reliable and secure telehealth platform that allows veterans real-time access to their healthcare team "through live video on any computer, tablet, or mobile device with an internet connection (VA Video Connect, n.d.). If a veteran does not have an existing compatible device, the VA will issue a VVC capable iPad to increase access to care (J. Kennedy, personal communication, May 2021). Group Occupational Therapy Thayer and Anderson (2018) report that physical isolation and depression increase loneliness, whereas a robust social network, weekly or more contact with friends, and more frequent participation in hobbies and clubs decrease loneliness. Evidence supports group VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 6 occupational therapy interventions as an effective method to promote wellness in older adults while promoting meaning and enjoyment for the participants (OBrien & Solomon, 2021). The Program Development Project Virtual group therapy allows occupational therapists to promote social participation and health promotion amongst homebound older adults. Additionally, it increases the efficiency and volume of visits for the occupational therapist by eliminating transportation time and maximizing patient involvement. By participating in group sessions, individuals expand their social network, connect with others who share similar experiences, and participate in community activities (AOTA, 2020). A virtual occupational therapy group class through the Cincinnati VA HBPC increases opportunities for homebound veterans to expand their social network, participate in health management activities, and engage in meaningful occupations. Theoretical Framework Person-Environment-Occupation Model The Person-Environment-Occupation (PEO) Model guided the initiation and advancement of the program development project to ensure client-centeredness. There are three components to the model: the person, the environment, and the occupations (Law et al., 1996). The PEO Model states that the interaction of the person, the environment, and the occupation facilitates participation (Law et al., 1996). A good fit of the three constructs supports meaningful participation; however, a poor fit can reduce engagement or performance in occupation (Law et al., 1996). Homebound veterans may experience disruptions to each component of the PEO Model, threatening overall occupational performance and participation. Social participation and health management can be especially challenging to maintain good fit due to the difficulty accessing community centers and health clinics. Focusing on improving the fit of the person, VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 7 environment, and occupation will promote enhanced occupational participation and performance for homebound veterans. Figure 1 illustrates how the PEO Model aligns with developing a virtual group occupational therapy class for homebound veterans to promote occupational participation. Figure 1 Person-Environment-Occupation Model Person Physical function Cognitive function Learning preferences Personality Environment Physical Environment: House set up, positioning Social Environment: Family/caregiver support Occupational Performance Occupation Health Management and Maintenance Social Participation Meaning Frequency Note. Adapted from Law et al., 1996, p. 18. Project Design and Implementation The initial phase of the program development project included a needs assessment and strengths, weaknesses, opportunities, and threats (SWOT) analysis (See Appendix A) to increase familiarity with the site and recognize areas for improvement. The needs assessment involved several weeks of observations (Table 1) and conversations with stakeholders associated with the Department of Veterans Affairs to strengthen knowledge of existing programs. The program developer kept field notes throughout the various experiences to track notable information and VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 8 findings. The SWOT analysis provided insight into strengths, weaknesses, opportunities, and threats that guided the area of focus for the program development project. Table 1 Observation Schedule Class Name Warrior Beat Drumming Group on Trust Power Hour Tai Chi Type of Class Leisure Mental Health Group Exercise Group Exercise Context Telehealth (VVC) Telehealth (VVC) Telehealth (VVC) In-Person Duration Leader 60 min COTA 60 min Psychologist 60 min 60 min Physical Therapist Physical Therapist Note. VVC= VA Video Connect, the telehealth platform through the Department of Veterans Affairs Methods A modified clinical improvement model provided structure to the planning and implementation process of program development. Splaine (2012) outlines four key questions to drive improvement in clinical practice. The program developer used the steps delineated by Splaine (2012) to develop a pilot program to improve occupational participation with homebound veterans (Table 2). The pilot program functioned as a virtual group occupational therapy class targeting health management and social participation. Inclusion criteria for participation in the pilot program included actively receiving home-based primary care services through the Cincinnati VA and having VVC (telehealth) capability. Caregiver involvement was encouraged but not necessary for participation in the virtual occupational therapy group class. The program developer drafted an outline of the class using insights from the literature and observation experiences, then presented the idea to the interdisciplinary home-based primary VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 9 care team. The interdisciplinary team members provided feedback and suggestions for recruitment and implementation. Table 2 Four Steps to Clinical Improvement Splaine (2012) Step 1: Outcomes: What is the general aim of this work, and who are we trying to help? Step 2: Process: What is the process for giving care to this type of patient? Step 3: Change: What ideas do we have for changing what is done (the process) to get better Step 4: Pilot: How can we pilot test an improvement idea? Program Development Project General Aim: Improve occupational participation (social participation, and health management) for homebound veterans in their home environment. Target population: Homebound Veterans Process: HBPC occupational therapists visit quarterly or as needed for occupational therapy services through virtual or in-home visits. Change: Offer group occupational therapy sessions via telehealth to facilitate occupational participation and increase the frequency of care. Pilot: Occupational Therapy Doctoral Student leads a month-long virtual group to trial group occupational therapy class to promote occupational participation with homebound veterans. Note. Table adapted from Splaine, 2012, Chapter 3: Improving Clinical Care p. 23 Recruitment The program developer and HBPC occupational therapists shared a protected excel sheet to track veteran referrals. The occupational therapists referred appropriate participants from their respective teams and provided contact information and additional notes as necessary. The program developer contacted appropriate veterans and educated them on the pilot program. Nine veterans confirmed interest in the pilot class; however, five total veterans attended the class. Supporting Material The program developer created a virtual presentation to share during the class that included large print, contrast, and visual guides to maximize accessibility and participation. Though the presentation increased the accessibility of the class, it limited flexibility and VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 10 adaptability during the class. The presentation was discontinued halfway through the pilot program to maximize the adaptability and client-centeredness of each class. The program developer utilized existing VA documentation templates to design a comprehensive but concise documentation template for the pilot program. The documentation template was designed to remain consistent with other VA occupational therapy notes to ensure readability and carryover in the future. The template included statements of virtual security, consent to virtual and group therapy, emergency contact information, and SOAP format documentation. Class Layout The pilot class ran for four weeks, offering two group sessions per week. Due to medication schedules, sleep schedules, and caregiver support, it was determined that a late morning class would be the most appropriate time to maximize attendance. Each class session ran approximately 60 minutes, allowing time to accommodate technological issues. The program developer contacted each interested veteran starting one hour before the class to confirm attendance for that day. The class began with introductions and prompted discussions to encourage social participation and to learn about the participants. Health and wellness education drove the next section of the class focusing on strategies to improve overall well-being (breathing techniques, stress management, mindfulness, etc.). The most significant portion of the class, lasting about 30 minutes, focused on maintenance exercise activities. The program developer guided the veterans and their caregivers through seated upper extremity exercises and stretches to promote endurance, strengthening, and joint mobility for increased occupational participation. The group class concluded with guided mindfulness targeting stress management, pain management, and breathing awareness. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 11 Challenges The process of joining a group call on VVC differed from the typical process of accessing an individual call which created initial confusion and frustration for the participants. The program developer and one of the HBPC occupational therapists completed home visits and telephone calls to educate the participants on strategies to access the group classes to reduce further issues. Other challenges included veterans who noted interest and then could not attend due to the inability to make contact, sudden hospitalization, or lack of caregiver assistance at the time of class. Telehealth etiquette became a challenge for individuals who did not know how to properly mute their microphone or video when they needed to tend to something in their home. Background noise such as telephones ringing and people talking would disrupt the group and interfere with the progression of the class. Appropriate clothing also became an issue for participants who lacked awareness of their video broadcasting. Understanding appropriate behaviors and knowing how to operate the telehealth system were learned to be essential skills for successful participation in the virtual group therapy class. Successes Caregivers were encouraged to participate in the group sessions to maximize education and carryover in the home. One caregiver attended the class consistently in an active observer role. The caregiver requested handouts of the exercises performed through the class to use at home between class sessions. The program developer created a handout (See Appendix B) with visual and written instructions on how to complete the exercises. Music became an integral part of the maintenance exercise section to increase enjoyment and encourage overall participation. The program developer choreographed the warm-up VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 12 exercises to rhythmic beats of popular songs (i.e., Eye of the Tiger, We Will Rock You). The program developer requested song suggestions from the participants, promoting more meaning and client-centeredness throughout the group class. Music became a central theme in social discussions and allowed the participants to find shared interests and learn more about one anothers music tastes. Project Outcomes Data collection After participation in the pilot group therapy class, participants and caregivers participated in an online focus group to discuss their experiences. Attendance of at least two classes was required to participate in the focus group to ensure reliability and validity of data. To strengthen the data, each participant who attended more than one class completed a retrospective pretest-posttest survey to gather insight related to veteran-perceived outcomes. Pretest-posttest statements were directly related to the Occupational Therapy Practice Framework 4th Edition (OTPF-4) to ensure occupation-based data. Four satisfaction statements gauged participant satisfaction related to various contexts of the pilot program. A mixed-methods approach strengthened the validity and reliability of data collection while expanding the inquiry with sufficient depth and breadth. (Dawadi et al., 2021, p. 27). Open-ended qualitative information complemented the close-ended quantitative data to enrich the overall findings of the experiences of the group participants (Dawadi et al., 2021). Quantitative The program developer designed a retrospective pretest-posttest survey (See Appendix C1) to measure patients self-rated participation in target occupations before and after involvement in the group therapy class. The retrospective design allowed participants to gauge VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 13 the degree of change they experienced with greater awareness and precision than a traditional pretest-posttest design (Little et al., 2020, p. 175). A five-point Likert scale allowed the participants to rate the degree to which they agreed, disagreed, or remained neutral with statements. This design allowed for a greater understanding of the participants opinions related to the prompt. Qualitative A focus group encouraged descriptive, discussion-based communication amongst group members regarding their overall experiences with the group therapy class. According to Dawadi et al. (2021), focus groups increase the depth of the research inquiry through more profound insight into the phenomenon from narratives. To reduce the potential for bias, the focus group moderator was a Cincinnati VA occupational therapy staff member who had no relation to the participants or the group class. The focus group was conducted online using VVC, the same telehealth platform used to access the group therapy class, to ensure ease and consistency. Thirteen open-ended prompts (See Appendix C2) encouraged discussion and probed themes throughout the focus group. Data Analysis Retrospective Pretest-Posttest Survey The most significant participant-rated improvement directly related to participation in the group OT class was physical activity and peer group participation. These results are consistent with the primary goals of the group to promote health management and social participation for homebound veterans. Table 3 includes the average patient-rated change in each target occupation and the average satisfaction rating for each satisfaction statement. Table 3 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 14 Retrospective Pretest/Posttest Survey Results Occupation Peer Group Participation Community Participation Physical activity Social and emotional health promotion and maintenance Average Change +1 NO CHANGE +3 NO CHANGE Satisfaction Statements I am satisfied with the care I received through the group occupational therapy class. I enjoy using telehealth (VVC) to receive occupational therapy. I enjoy participating in groups for occupational therapy. I enjoy meeting new people through telehealth group occupational therapy. Average Rating 5/5 5/5 5/5 4.5/5 Note. Results based on the feedback of two veteran participants, caregivers did not complete the survey. Focus Group The program developer analyzed the focus group data using a thematic analysis involving coding and identifying themes from the focus group discussion (Clarke et al., 2015). The program developer used Otter.ai, an iPhone application, to audio record and transcribe the focus group. Clarke et al. (2015) outline six phases of thematic analysis: 1. Familiarization with the data. 2. Coding the data. 3. Searching for themes within the themes. 4. Reviewing themes. 5. Defining and naming themes. 6. Writing the report. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 15 The program developer reviewed and edited the transcripts to accomplish phase one of the 6 phases of thematic analysis (Clarke et al., 2015). Continuing through the steps, the program developer coded the data and condensed the codes into themes. The program developer used Mind Node (2021) to visualize the themes and make several adjustments before defining and naming the data (Figure 2). Figure 2 Mind Map of Thematic Analysis Note. Mind Map created using Mind Node (2021). Themes Home but not Bound The participants appreciated being involved in the class from the comfort of their own homes due to the complex nature of their health that limits their ability to leave their houses. I appreciate the group online because I can do it at home. The participants emphasized the value of accessing conversations, social support, and group comradery through the group therapy class. One participant explained how the virtual environment felt normal due to the real-time VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 16 connection. Its almost in person anyway because you can see everyone doing the exercises all together. The participants valued the real-time coaching and encouragement from the program developer, stating that it was more personal than watching a video. Virtual group therapy provides a platform for individuals to come together from their home environment and support one another in reaching their goals. We Got the Beat Participants endorsed music as one of the most enjoyable and interactive components of the virtual group therapy class. When asked about their favorite part of the class, one participant said, it all goes back to music. The participant elaborated that music increased their engagement in the group class by giving them a role in choosing the music. Additionally, the participants agreed that they would spend time outside of the group class thinking about songs to suggest and researching music history to share with the group, thus engaging in leisure occupations. The participants enjoyed the songs with more drumbeats and rhythmic music since it was easier to follow along and anticipate the movement. One participant said, I like watching other people enjoying themselves. I love that. I really got a lot out of it for that reason, other than really enjoying the experience. Music encouraged participants to express themselves by dancing and singing throughout the exercise portion of the class. The participants agreed that music increased the energy, engagement, and enjoyment of the group occupational therapy class. Caregiver Involvement Role confidence of the caregiver was reported to be a significant outcome of the group occupational therapy class. The caregiver provided valuable insight into their perspective of the class from an observer role. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 17 It [the group class] has been very enjoyable for all of us, me included, and I just kind of sat, listened, and watched but it helped me to help [the veteran] later on and now I know how to do these things and I can get him to do them and know that he's doing it right or not. So yeah, it was very good for all of us. The transparent and real-time relationship between the caregiver, participant, and program developer allowed for a shared understanding of expectations. Furthermore, the caregiver requested resources and educational materials through the virtual group class that they noted to be beneficial for carryover in the home. The caregiver's involvement in the group allowed for opportunities to increase the carryover of skills and activities in the home while increasing role confidence of the caregiver. Social Participation Participants appreciated the opportunity to connect with others who have shared experiences through involvement in the group occupational therapy class. The participants reported looking forward to sharing stories and learning from one another during the class. In addition to enjoying the conversations and learning about one another, they also reported improving their social skills. One participant explained how the telehealth platform challenged and improved their listening skills, Discussion was really interesting, I learned quite a bit and I'm a much better listener now I've come to realize. Summary The incidence of multiple chronic conditions in older adults can contribute to complex medical issues that make it challenging for individuals to safely leave their homes. Homebound older adults are at an increased risk for depression resulting in increased feelings of loneliness and decreased social participation and activity engagement (Garabrant & Liu, 2021). Telehealth VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 18 increases access to care while eliminating time and costs associated with transportation for the patient and the practitioner. Furthermore, group therapy is an effective intervention method to promote wellness and facilitate social participation in older adults to reduce feelings of loneliness and depression. A pilot program at the Cincinnati VA supports virtual group occupational therapy services as an effective and enjoyable method to promote health management and social participation among homebound veterans. Quantitative and qualitative data analysis support the implementation of virtual group therapy in home-based primary care to increase access and frequency of client-centered care. Participants endorsed telehealth as an effective, real-time, and client-centered alternative to in-person therapy sessions. Furthermore, consistent caregiver involvement in the group class increased confidence in the caregiving role and improved carry over into the home. Future implications involve expanding group therapy services across other disciplines (physical therapy, recreation therapy, dietetics, psychology, etc.) and exploring more domains within the occupational therapy scope of practice. Conclusion The program development project contributed rich insight into virtual group occupational therapy to promote health management and social participation among homebound veterans. The Cincinnati VA Home-Based Primary Care team has gained awareness of the advantages of virtual group therapy to meet their clients' individual needs, involve the caregiver in the care plan, and offer more frequent client-centered services. The interdisciplinary team members on the HBPC team have access to resources and guides to continue or create group therapy in their practice. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 19 Occupational therapy practitioners should explore opportunities to use telehealth to increase the frequency and quality of care for homebound older adults. Additionally, occupational therapy practitioners should explore group therapy as a service delivery model for patients who lack adequate social participation. Lastly, more research on the role of occupational therapy for homebound older adults and their caregivers should be completed to better understand how to serve this growing population of homebound older adults. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 20 References Berger, S., Escher, A., Mengle, E., & Sullivan, N. (2018). Effectiveness of Health Promotion, Management, and Maintenance Interventions Within the Scope of Occupational Therapy for Community-Dwelling Older Adults: A Systematic Review. The American Journal of Occupational Therapy, 72(4), 7204190010p1-7204190010p10. https://doi.org/10.5014/ajot.2018.030346 Cheng, J. M., Batten, G. P., Cornwell, T., & Yao, N. (2020). A qualitative study of healthcare experiences and challenges faced by ageing homebound adults. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 23(4), 934 942. https://doi.org/10.1111/hex.13072 Clarke, V., Braun, V., & Hayfield, N. (2015). Thematic Analysis. In Qualitative Psychology: A Practical Guide to Research Methods (3rd ed.). SAGE. Dawadi, S., Shrestha, S., & Giri, R. A. (2021). Mixed-Methods Research: A Discussion on its Types, Challenges, and Criticisms. Journal of Practical Studies in Education, 2(2), 2536. https://doi.org/10.46809/jpse.v2i2.20 Garabrant, A. A., & Liu, C. (2021). Loneliness and Activity Engagement Among Rural Homebound Older Adults With and Without Self-Reported Depression. 75(5), 9. Home Based Primary CareGeriatrics and Extended Care. (n.d.). [General Information]. Retrieved February 4, 2022, from https://www.va.gov/geriatrics/pages/Home_Based_Primary_Care.asp Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The PersonEnvironment-Occupation Model: A Transactive Approach to Occupational Performance. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 21 The Canadian Journal of Occupational Therapy, 63(1), 923. http://dx.doi.org/10.1177/000841749606300103 Little, T. D., Chang, R., Gorrall, B. K., Waggenspack, L., Fukuda, E., Allen, P. J., & Noam, G. G. (2020). The retrospective pretestposttest design redux: On its validity as an alternative to traditional pretestposttest measurement. International Journal of Behavioral Development, 44(2), 175183. https://doi.org/10.1177/0165025419877973 MindNode. (2021). IdeasOnCanvas GmbH (Version 2021.1.2) [Mobile application software]. Retrieved from https://www.mindnode.com OBrien, J., & Solomon, J. (2021). Occupational analysis and group process (Second). Elsevier, Inc. Occupational Therapy Practice Framework: Domain and ProcessFourth Edition. (2020). The American Journal of Occupational Therapy, 74(Supplement_2), 7412410010p17412410010p87. https://doi.org/10.5014/ajot.2020.74S2001 Park, J. H., Moon, J. H., Kim, H. J., Kong, M. H., & Oh, Y. H. (2020). Sedentary Lifestyle: Overview of Updated Evidence of Potential Health Risks. Korean Journal of Family Medicine, 41(6), 365373. https://doi.org/10.4082/kjfm.20.0165 Patterson, A., Harkey, L., Jung, S., & Newton, E. (2021). Patient Satisfaction With Telehealth in Rural Settings: A Systematic Review. The American Journal of Occupational Therapy, 75(Supplement_2), 7512520383p1-7512520383p1. https://doi.org/10.5014/ajot.2021.75S2PO383 Reckrey, J. M., Yang, M., Kinosian, B., Bollens-Lund, E., Leff, B., Ritchie, C., & Ornstein, K. A. (2020). Receipt of Home-Based Medical Care Among Older Fee-for-Service Medicare VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 22 Beneficiaries. Health Affairs (Project Hope), 39(8), 12891296. https://doi.org/10.1377/hlthaff.2019.01537 Schuchman, M., Fain, M., & Cornwell, T. (2018). The Resurgence of Home-Based Primary Care Models in the United States. Geriatrics, 3(3), 41. https://doi.org/10.3390/geriatrics3030041 Sclarsky, H., & Kumar, P. (2021). Community-Based Primary Care Management for an Older Adult With COVID-19: A Case Report. The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association, 75(Supplement_1), 7511210030p1-7511210030p7. https://doi.org/10.5014/ajot.2021.049220 Splaine, M. E. (Ed.). (2012). Practice-based learning & improvement: A clinical improvement action guide (3rd ed). Joint Commission Resources. Thayer, C., & Anderson, G. O. (2018). Loneliness and Social Connections: A National Survey of Adults 45 and Older. AARP Research. https://doi.org/10.26419/res.00246.001 The homebound requirement for Medicare home health services. (n.d.). Medicare Interactive. Retrieved April 19, 2022, from https://www.medicareinteractive.org/get-answers/medicarecovered-services/home-health-services/the-homebound-requirement VA Cincinnati health care. (n.d.). Veterans Affairs. Retrieved February 4, 2022, from https://www.va.gov/cincinnati-health-care/ VA Video Connect. (n.d.). https://mobile.va.gov/app/va-video-connect Veterans Health Administration. (n.d.). [Homepage]. Retrieved February 4, 2022, from https://www.va.gov/health/ Wong, C., & Leland, N. E. (2018). CE Article: Applying the PersonEnvironmentOccupation Model to Improve Dementia Care. https://myaota.aota.org/shop_aota/product/CEA0518 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS Xiang, X., & Brooks, J. (2017). Correlates of Depressive Symptoms among Homebound and Semi-Homebound Older Adults. Journal of Gerontological Social Work, 60(3), 201214. https://doi.org/10.1080/01634372.2017.1286625 23 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 24 Appendix A SWOT Analysis The program developer completed a SWOT analysis to gain insight into the strengths, weaknesses, opportunities, and threats within the Cincinnati VA Home-Based Primary Care service. This guided analysis allowed the program developer to better understand how to develop a program to best meet the needs of the site. VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS Appendix B Upper Extremity Exercise Handout 25 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 26 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 27 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 28 Appendix C Quantitative and qualitative outcome measurements 1. Retrospective Pretest Posttest Survey 1= Strongly Disagree 2= Somewhat Disagree 3= Neutral 4= Somewhat Agree 5= Strongly Agree Before participating in the group OT class Peer Group Participation: I engage in activities with others who have similar interests, age, background, or social status. Community Participation: I engage in activities that result in successful interaction at the community level (e.g., neighborhood, digital social network, religious or spiritual group) Physical activity: I complete cardiovascular exercise, strength training, and balance training to improve or maintain health and decrease risk of health episodes Social and emotional health promotion and maintenance: I seek occupations and social engagement to support health and wellness Social and emotional health promotion and maintenance: I make choices to improve my quality of life in participation After participating in the group OT class 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 I am satisfied with the care I received through the group occupational therapy class. 1 2 3 4 5 I enjoy using telehealth (VVC) to receive occupational therapy. 1 2 3 4 5 I enjoy participating in groups for occupational therapy. 1 2 3 4 5 3 4 I enjoy meeting new people through telehealth group occupational therapy. 1 2 5 VIRTUAL GROUP THERAPY FOR HOMEBOUND VETERANS 2. Focus Group Prompts Describe your overall experience with the group. What were your favorite parts of the groups? What were the biggest challenges with the groups? What do you wish there was more of? What do you wish there was less of? How did you feel about the group on-line, opposed to in person? Describe your experience meeting new people online. If you could change anything about the group, what would you change? What type of classes would you like to see in the future? What is one thing you learned from the class? How would you describe this class to a stranger? Were you satisfied with how many times a week the class was offered? Do you wish the classes were longer or shorter in duration? Or were they just right? 29 Appendix D Weekly Planning Guide Week 1 DCE Stage Orientation Screening/Evaluatio n Weekly Goal 1) Complete site orientation by the end of the week Objectives Tasks Meet with site mentor, set meetings with other site personnel to introduce myself and educate them on why I am here/what I will be doing for the 14 weeks - Understand the site environment/where to work/dress code/etc. - 2) Confirm student/mentor expectations and responsibilities Finalize student/mentor expectation section of MOU 1) Prep and begin needs assessment Finalize planning for Needs Assessment (identify and contact stakeholders) - - Familiarize self with group therapy class Ensure that all paperwork for orientation is complete Get badge and VA account access Identify key stakeholders Set up meetings with key stakeholders Compile questions and discussion points for meetings with stakeholders Set up meeting with site mentor to discuss expectations Document supervision plan and update MOU with site mentor Date complete Jan 10, 2022 Jan 5, 2022 Jan 6, 2022 - Locate VA group class schedule Set up class observation Create field notes template 2) Update literature review 2 Screening/Evaluatio n 1) Observe existing groups and meet with stakeholders offerings and observation options Finalize project and identify key themes to guide literature search Update existing literature review with current literature Immerse self into a variety of group classes offered throughout the VA - - Finalize observation schedule across various disciplines and platforms 2) Continue to refine the project and update MOU Update needs assessment and SWOT Select theory/framework to guide capstone project - Create an excel schedule to organize/track data Write a list of major themes/areas of DCE project Use UIndy Library to search for articles within the last 5 years Attend scheduled observations and keep field notes Prepare questions and talking points Update literature review Complete SWOT analysis Jan 7, 2022 Jan 14, 2022 Jan 14, 2022 3 Screening/Evaluatio n 1) Begin participant recruitment Present project to all occupational therapists within HBPC Present project to HBPC interdisciplinary teams - - Gather list of potential participants 4 ImplementationPreparatory tasks 2) Finalize MOU and discuss project progression with faculty and site mentor Update MOU with literature updated project outcomes - Make any changes to improve project based on feedback - 1) Complete all preparatory tasks related to program implementation Create documentation template to use for OT virtual groups - Confirm billing codes - Create all supplemental resources that will be used during class - Practice using virtual platform to increase familiarity - Create a secured and shared excel sheet to collect participant referrals with contact information Prepare brief presentation for weekly HBPC IDT meeting Make necessary changes to MOU to align with updated project goals and outcomes Schedule and attend faculty and site mentor meetings to Refer to existing documentation templates to guide create of virtual group OT notes Research and discuss billing codes with stakeholders Create presentation to share throughout virtual OT group with consideration to accessibility Practice creating groups, sharing information, Jan 21, 2022 Jan 21, 2022 Jan 27, 2022 2) Complete particpant recruitment Call all referred veterans to follow up and give more information about the course Track all participants and their availability in secure excel sheet - 5 Implementation 6 Implementation 7 Run HBPC Group OT Pilot Program Run HBPC Group OT Pilot Program Run HBPC Group OT Pilot Program Adjust group sessions as necessary Document group OT class Take fieldnotes and track participant attendance Adjust group sessions as necessary Document group OT class Take fieldnotes and track participant attendance Midterm evaluation Adjust group sessions as necessary - adding participants, troubleshooting, etc. Refer to recruitment list for all veterans names Confirm their phone number with their patient chart Call/leave a message describing the group class and how to get involved Update excel sheet with information gained during calls Create plan for upcoming class Call veterans to confirm attendance Assist with technology issues as needed Document sessions and keep fieldnotes Create plan for upcoming class Call veterans to confirm attendance Assist with technology issues as needed Document sessions and keep fieldnotes Create plan for upcoming class Jan 28, 2022 Feb 4, 2022 Feb 11, 2022 Feb 18, 2022 Implementation Document group OT class Take fieldnotes and track participant attendance Create outcome tool 8 Implementation Run HBPC Group OT Pilot Program Adjust group sessions as necessary Document group OT class Take fieldnotes and track participant attendance Finalize outcome tool and plan for data collection - 9 Implementation/ Discontinuation Gather data using outcome measures Run focus group - Call veterans to confirm attendance Assist with technology issues as needed Document sessions and keep fieldnotes Research appropriate outcome tools for data collection Develop outcome tool Create plan for upcoming class Call veterans to confirm attendance Assist with technology issues as needed Document sessions and keep fieldnotes Finalize outcome tool and method for administration Confirm focus group date and finalize prompts for discussion Confirm VA staff to lead focus group to reduce potential for bias Confirm VA staff to administer survey to reduce potential for bias Obtain consent for focus group audio recording Feb 25, 2022 March 4, 2022 - Focus Group - Retrospective pretest/posttest survey Collect pretest/posttest surveys - 10 Discontinuation Begin data analysis Review and edit transcripts for accuracy Begin coding qualitative data from focus groups Analyze quantitative data from pretest-posttest surveys - 11 Discontinuation Continue data analysis Continue coding qualitative data Develop Group OT Binder Dissemination plan due - Finalize focus group prompts Select transcription software Email participants link to focus group Run focus group and thank participants for participation in class and focus group Type transcripts from focus group Familiarize self with focus group transcripts Begin coding Average scores from pretest-posttest survey Analyze changes in pretest and post test scores Average satisfaction ratings Set up and confirm dates for dissemination to site Continue thematic analysis of qualitative data Organize resources into binder Create helpful guides for group OT implementation March 11, 2022 March 18, 2022 12 Discontinuation Finalize data analysis Complete all tasks related to data collection/analysis Synthesize findings and plan for how to translate findings into practice 13 14 Discontinuation/Diss emination Dissemination - Develop dissemination resources and presentation Create resources to leave for HBPC team - Create and finalize presentation - Disseminate project to VA interdisciplinary team Confirm time/place/attendees for dissemination of project - Final Site Mentor Evaluation Complete all employee exit tasks at the VA Finalize presentation and resources (printed presentation, hand outs, etc.) Complete final site mentor evaluation from CORE Complete all exit tasks at VA - Continue thematic analysis of qualitative data Finalize themes Select supporting quotes to emphasize in write up Create visual representation of data through Mind Map March 25, 2022 Organize helpful resources to leave with site Develop Binder and eBinder to leave resources at site Finalize presentation to site Site mentor review and give feedback for site presentation Final Evaluation on CORE Complete all exit tasks for the VA. April 1, 2022 April 7, 2022  ...

... YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 1 A Program for Young Adults within the Community Cancer Survivorship Setting Morgan Haney May 4, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kate M. Polo, DHS, OTR, CLT-LANA YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 2 A Program for Young Adults within the Community Cancer Survivorship Setting Morgan Haney The University of Indianapolis YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 3 Abstract Young adult (YA) cancer survivors and YAs impacted by familial cancer experience a variety of barriers that impact their overall well-being, however, there is a distinct lack of targeted programming for this population. As YAs are beginning to live more independently and establish themselves within the community, one can see how a cancer diagnosis would impact their development and ability to transition to their next stage of life. It is necessary to understand the unique needs of the YAs and how cancer impacts their independence and social wellness to better facilitate inclusivity and independence for this population. With education on occupational therapy (OT) services, self-care, stress management, and social wellness and participation in a social event, OT practitioners can educate and encourage independence and social participation within the community. The purpose of my Doctoral Capstone Experience (DCE) was to develop and implement the YA Cancer Support Program at the Cancer Support Community (CSC) Indiana with the goal of increasing knowledge on various topics and providing a social opportunity to the YA population. It was determined that all participants reported having a better understanding of what OT is and how OT can help in cancer survivorship. They also reported having a better understanding of social wellness and how to incorporate social activities within their lives. Additionally, all participants reported that they would be interested in attending future YA programming events. The results of this program indicate the positive impact OT can have within the community cancer survivorship setting which further advocates for OT within emerging practice settings. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 4 A Program for Young Adults within the Community Cancer Survivorship Setting With the most recent data in 2017, 1,701,315 new cases of cancer were reported in the United States, meaning that for every 100,000 people, 438 new cancer diagnoses were reported (Centers for Disease Control and Prevention (CDC), 2017). In Indiana, 34,318 cases of cancer were reported in 2017 (CDC, 2017). Not only does cancer affect the patient, it also affects family members, significant others, and friends of that individual (Al & Ahmad, 2018; DionneOdom et al., 2018; Metcalf et al., 2017; Morris et al, 2018; Patterson et al., 2017). Clearly, cancer has touched many lives. The Cancer Support Community (CSC) Indiana is a non-profit organization that offers a wide variety of free, evidence-based programs and resources for cancer survivors and their support system. At CSC, the mission is To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. So that no one faces cancer alone (CSC, n.d.). CSC recognizes the important role that occupational therapy (OT) can bring to cancer survivorship within the community setting and worked closely with me for ideas on program development. In 2021, CSC did not offer any programming for the young adult (YA) population, therefore, I collaborated closely with my site mentor, Lora Hays, and CSCs program and outreach coordinator, Hunter Stafford, to develop YA programming. The purpose of my DCE was to increase knowledge on various topics and provide a social opportunity to the YA population through the development and implementation of the YA Cancer Support Program at CSC. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 5 Background Literature Review Occupational Therapy within the Community Cancer Survivorship Setting Cancer survivors may face many physical and mental impairments throughout their cancer journey which can have a significant impact on their daily functioning. Occupational therapy (OT) can provide a unique perspective that can benefit cancer survivors as they face limitations in daily activities (Baxter el al., 2017 & Polo et al., 2017). Within the community cancer survivor setting, OT can offer health and well-being services that help improve cancer survivors participation in life roles. social participation, occupational and community engagement, and quality of life (Polo et al., 2017; Coss et al., 2017). These services can be provided in a group setting with client-centered services and OT can further refer to outpatient OT if the individual has any individualized needs (Polo et al., 2017). More specifically, OT can provide services addressing barriers such as cancer-related fatigue management, cancer-related cognitive dysfunction strategies, cancer-related peripheral neuropathy management, cancerrelated pain management, lymphedema management, and psychosocial issues (Baxter et al., 2017). By addressing these barriers, OT can facilitate increased participation in daily activities aimed at improved health, well-being, and participation (Coss et al., 2020). The cancer survivor community setting has been considered an emerging practice area for OT (Polo et al., 2017). OT practitioners have faced several barriers to providing services including not being recognized as an important service at interdisciplinary program planning meetings (Polo et al., 2017). Due to the lack of awareness of what OT can offer, providing clear documentation and gaining reimbursement for OT services within the cancer survivorship YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 6 community setting has been difficult. Due to this, OT practitioners must continue to increase awareness of the cancer survivor community setting within the OT profession, develop supporting documentation of OTs role, advocate for a larger role for OT within this setting, and document and disseminate the efficacy of interventions in cancer survivorship programs (Polo et al., 2017). According to a scoping review, there has been minimal research on OT within the YA cancer survivor population indicating that there is a need for advocacy for OT within this population (Wallis et al., 2020). Completing my DCE within the cancer survivorship community setting has advocated for OT programs within CSC, provided documentation of successful programming within the YA cancer survivor population, and shared awareness of this emerging practice setting with fellow colleagues and professions. Young Adults Impacted by Cancer: Physical and Psychosocial Impacts For YA cancer survivors, there have been many physical and psychosocial impacts. Some common physical symptoms of cancer included lymphedema, fatigue, pain, and peripheral neuropathy (Polo & Smith, 2017). Cancer-related fatigue has been one of the most prevalent, severe, and debilitating symptoms in the YA cancer survivor population and early fatigue intervention has been warranted before any maladaptive rest-based behaviors develop during this YA age (Spathis et al., 2015; Spathis et al., 2017). These cancer-related symptoms can negatively impact participation in daily activities, including self-care, which can directly impact overall quality of life (Baxter et al., 2017; Wallis et al., 2020). The psychosocial effects of cancer can also have detrimental impacts on YAs mental health. YA cancer survivors tend to experience increased feelings of depression and anxiety and their social wellness can be negatively impacted (Penn & Kuperberg, 2018). Also, considering the significance of peer relationships during young adulthood, social-based interventions can play an important role in YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 7 development and psychological adjustment and may potentially lead to a decrease in depression and anxiety (Penn & Kuperberg, 2018). In one study, more than 50% of the psychosocial needs of YA cancer survivors remained unmet due to limited availability of intervention programs and services that specialize within this unique population (Aubin et al., 2018). In another study, many YA cancer survivors reported unmet health care needs, including physical and occupational therapy and mental health services (Keegan et al., 2012). This indicates a need for advocacy for OT services and psychosocial intervention within the YA cancer survivor population. For YAs impacted by familial cancer, there have been many reports of unmet needs including conflict among their social roles, lack of education on the caregiving role, time restriction for leisure activities, strain in familial and friend relationships, psychological distress, and diminished physical and mental wellbeing (Kim & Carver, 2019; Morris et al., 2018; Patterson et al., 2017). Due to the increased household and caregiving responsibilities, YAs impacted by familial cancer tend to experience isolation from those outside of the family and activity restrictions (Metcalf et al., 2017; Morris et al., 2018). In a study that focused on examining the psychosocial impacts of parental cancer on YAs, it was found that YAs reported higher state and trait anxiety and a lower social support satisfaction (Metcalf et al., 2017). These findings suggested that having a larger and more satisfying social support network predicted lower state and trait anxiety in YAs affected by parental cancer (Metcalf et al., 2017). Poor coping strategies, increased responsibility, the caregiving role, and decreased social support can have a significant impact on the mental health of YAs (Kim & Carver, 2019; Metcalf et al., 2017; Morris et al., 2018; Patterson et al., 2017). In a study focusing on describing levels of and relationships between distress and psychosocial unmet needs in YAs impacted by familial cancer, it was found that these individuals experience 3 to 6 times the levels of high or very high YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 8 distress (Patterson et al., 2017). These levels were similar to the levels of other YAs who seek treatment for mental health issues (Patterson et al., 2017). Clearly, the mental health of YAs has been negatively impacted when a parent or family member received a cancer diagnosis. Theoretical Framework Since my project focused on a population that has not been directly addressed through CSC, it was important to understand the needs of the whole YA population in order to address the individual needs. The KAWA model emphasized the importance of addressing the whole system rather than just an individual self, therefore, helped guide my program development and implementation (Lim & Iwama, 2011). For my project, the river walls and bed included CSC and all the programs that they offered. For the river itself, the upstream, or the past, included an YAs life prior to a cancer diagnosis while the downstream, or the future, included life after a cancer diagnosis. The barriers or rocks that the YA population may face include decreased quality of life, lack of support, decreased mental health, increased stress, lack of education on available services, and feelings of loss. The driftwood, or resources that can be helpful or obstructive include attitude, personality, personal values, and time. The KAWA model has helped implement the goal of enabling and enhancing the life flow of each young adult by connecting them with others that are going through a similar experience (Lim & Iwama, 2011). Additionally, the lifespan frame of reference (FOR) helped guide my DCE. The lifespan FOR focused on the use of transitional tasks, establishing or restoring occupations, and adapting to changes (Cole & Tufano, 2008). For my project, I focused on restoring occupations that may be more difficult to participate in due to a cancer diagnosis. Also, I focused on educating clients on healthy ways to adapt to this life change and how to balance personal roles and routines related to self-care, stress management, and social wellness. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 9 Methods Needs Assessment CSC Indiana has offered many programs; however, these programs primarily included those aged 55+. CSC has adapted their programming to this age group and does very well with targeting the 55+ population. Although CSC Indiana has had young adults, aged 18-35, participate in programs in the past, in 2021, less than two percent of their participants fell within the YA 18-35 age range. During the needs assessment, it was determined that a program specifically for the YA population aged 18-35 would help serve a population that CSC has not directly created a program for before. In the past, CSC had not created a program specifically for the YA population and there were not any similar programs available for the YA population within the Indianapolis area. After collaborating with Lora and Hunter, we determined that I would create programming for the YA population aged 18-35. Marketing To market the YA Cancer Support Program, I collaborated closely with Lora and Hunter and CSCs marketing Lead, Karissa Rates. I took the lead on marketing the program and there were many different marketing strategies that were utilized. First, I created a poster that included a picture of younger adults, explained the program, and included prizes for the social event. Next, I created a document with contact information to the communities I wanted to reach within the YA population. I reached out to local colleges, hospitals, CSCs support group leaders, and local community organizations that may have YA cancer survivors, such as multiple YMCA Indianapolis locations, local breast cancer organizations, and the Leukemia and Lymphoma Society. Next, I utilized CSCs social media platforms (Facebook and Instagram) to market the YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 10 program and I shared these posts on my social media accounts, as well. These posts were advertised the week prior to the events and the day before the events. Lastly, all inquiries were forwarded to my email and I answered any questions about the program to those who were interested. Participants and Target Population The target population for the program included YA cancer survivors and YAs impacted by familial cancer. However, the participants in the educational session included 2 YA cancer survivors and the social event included 2 YA cancer survivors and 1 significant other. Only 1 participant had attended CSC programs in the past while the other had not. Program Design and Implementation The purpose of my DCE was to increase knowledge on various topics and provide a social opportunity to the YA population. Originally, I planned to host separate educational sessions and social events for YA cancer survivors and YAs impacted by familial cancer. However, since there were only 2 participants interested in attending the YAs impacted by familial cancer, I combined the educational sessions and social events. After the changes to the YA Cancer Support Program were made, I developed and led 1 educational session and 1 social event. I presented the virtual educational session on 03/09/2022 from an OT perspective covering self-care, stress management, and social wellness which supplemented an in-person social event. Since only 1 participant was able to attend the live zoom meeting, I adapted the presentation to be more of a discussion about her life and provided client-centered recommendations. The other 2 participants that could not come were provided with a YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 11 VoiceThread presentation of the information. For the social event, I gathered donations from various local businesses such as Chick-fil-A, Target, Indy Fuel tickets, and a few prizes CSC donated from a silent auction. Prior to the social event, I utilized CSCs food donation by gathering and preparing desired food items and for the participants to enjoy during the event. The social event took place at CSCs building on 03/25/2022. During the social event, participants were encouraged to ask questions about the educational session, share their cancer journey, and enjoy the night with trivia games and prizes. Program Evaluation and Dissemination For the project evaluation, I developed and administered a pre and post survey. I collaborated with Lora and Hunter on their standard registration and adapted my pre and post survey to align with their registration and feedback survey. The pre-survey included a participant information section focusing on demographics that CSC collects and another section with the PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a. The participant information section asks for demographic information including name, age, email, and if they are a young adult cancer survivor or young adult impacted by familial cancer. Also, this section specifically addresses if the dates and times for the events work for them and if they have other dates or times that may work better, food allergies, if they would like to receive more information about the programming that CSC offers, and a photo consent. All information within this section was utilized to help organize the events, get contact information, and collect information for CSC to report. Within the second section, the PROMIS Item Bank v2.0 Satisfaction with Social Roles and Activities Short Form 8a was utilized. This tool has a 5 point Likert scale ranging from Not at all to Very Much to measure satisfaction with performing ones usual social roles and activities. Since social wellness was established within YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 12 the literature to be impacted within the young adult population, this assessment identified social roles and activities that were negatively impacted due to a cancer diagnosis. The information from the PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a assessment was utilized to adapt the educational session by including intervention strategies to address the lower reported scores on the assessment. The post-survey was a summative assessment that included questions regarding understanding OT, self-care within a daily routine, and social wellness. Additionally, the post-survey included questions regarding satisfaction with the program, how the program could improve, and if participants were interested in attending future events. For dissemination of my DCE, I created an organized binder and presented it to Lora and Hunter. The binder included information on marketing the program, resources for the educational session and social event, results, references, and my scholarly report, poster, and presentation. When I presented the binder to Lora and Hunter, I reviewed all the information within the binder and gained feedback from them. Lastly, I adjusted the binder based on feedback so that CSC could easily access information on YA programming for future events. Results Pre-survey The pre-survey indicated that 100% of participants were YA cancer survivors from ages 18-33. The pre-survey indicated that 100% of participants were available for the educational session and in-person social event, however, 1 participant reported that they were not able to attend the social event due to being immunocompromised. The PROMIS Item Bank v2.0 Satisfaction with Social Roles and Activities Short Form 8a assessment determined that 66.7% YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 13 of participants reported being Not at all satisfied with their ability to do fun things with others, feel good about their ability to do things for their friends, their ability to do fun things for fun outside their home, and their ability to meet the needs of their friends. Additionally, 66.7% of participants reported being A little bit satisfied with their ability to do the work that is really important to them and their ability to meet the needs of their family. Refer to Figure 1 for more detailed results on The PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a. Post-survey The post-survey indicated that there were 2 YA participants and 1 YA family member or friend. All participants reported having a better understanding of what OT is, how OT can help in cancer survivorship, and having a better understanding of social wellness and how to incorporate social activities within their lives. Examples of what participants reported learning about OT and cancer survivorship include topics related to energy conservation and self-care participation. When asked about how they would include social activities within their lives, participants reported spending more time with family and friends and going to social events more frequently. Participants were asked to provide examples of what they learned, what was most helpful, and how the program could have been more helpful which can be referenced in Table 1. Participants reported that having more meeting times and having more participants would improve this program. The post-survey determined that all participants reported that they would be interested in attending future educational sessions and social connectedness events. Additionally, 66.7% of participants were interested in attending other programs offered by CSC Indiana. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 14 Discussion The current literature indicates that there are many unmet needs within the YA cancer population including decreased participation in daily activities, decreased social wellness, and negative impacts on psychosocial wellbeing (Baxter et al., 2017; Kim & Carver, 2019; Morris et al., 2018; Patterson et al., 2017; Spathis et al., 2015; Spathis et al., 2017). The YA Cancer Support Program addresses these unmet needs by providing a client-centered, educational session, and social event. The goal of the program was to increase knowledge on various subjects within the educational session and promote social participation and social wellness through the social event. According to the overall program evaluation results and the needs expressed from the YA population, the client-centered educational sessions and social events were essential in promoting overall well-being, independence, and social wellness within the YA population. More specifically, the educational session promoted learning in OT and cancer survivorship, self-care, and social wellness while the social event promoted social participation and social wellbeing. The feedback on the post-survey suggests that participants were, overall, satisfied with the program and would be interested in future YA programming. The results of this program indicate the positive impact OT can have within the community cancer survivorship setting which further advocates for OT within this emerging practice setting. Lastly, the YA Cancer Support Program adds value to CSC by providing programming for the YA population in central Indiana. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 15 Limitations There were some limitations within the YA Cancer Support Program development and implementation. First, there were limited participants within the program. Although there were 6 inquiries on participation within the program, only 3 filled out the pre-survey, 1 attended the educational session, and 2 attended the social event. A participants significant other joined the social event, making 3 participants present at the social event. Also, we decided to combine the YA cancer survivors and YAs impacted by familial cancer populations due to a lower participation. Another limitation included availability of participants for educational sessions and social events. A participant that was immunocompromised could not participate and another participant could not attend the live educational session due to work conflicts. To address this, I provided a VoiceThread of the educational session to participants who were not able to attend and offered to zoom in the immunocompromised participant that could not be in-person. Ultimately, this inconsistency in availability and participation limited how many events I could host. Implications for practice OT emphasizes the importance of engagement in meaningful occupations and its impact on overall well-being for all individuals (Baxter et al, 2017; Wallis et al., 2020). The YA Cancer Support Program encouraged participation in meaningful occupations through an educational session and promoted social participation through a social event. Within the educational session, I addressed OT within cancer survivorship and how to gain access to OT services, which directly advocated for OT for participants. Additionally, I was given many opportunities to advocate for OT at CSC within various CSC organization meetings. This not only gave me an opportunity to advocate for my program, but, also, allowed me to educate employees on OT and how OT can YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 16 help the cancer survivorship population. Lastly, I was able to advocate for OT within an emerging practice setting to fellow classmates through a weekly online forum and presentation. This helped increase awareness to future OT practitioners on how OT can help within this setting which can be helpful if they come across this setting within their future practice. Conclusion Overall, the results of the YA Cancer Support Program indicate positive outcomes that CSC can continue to provide to the YA population. Throughout my experience, I gained a new perspective on the unique role OT has within the community cancer survivorship setting and how to incorporate program development and implementation to a population with many unmet needs. Also, I was challenged with self-directed learning and given many opportunities to advocate for OT. Overall, my DCE and CSC was great, and I gained many new perspectives and skills that I will be able to carry over into my future practice. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 17 References Al Daken, L. I., & Ahmad, M. M. (2018). The implementation of mindfulnessbased interventions and educational interventions to support family caregivers of patients with cancer: A systematic review. Perspectives in Psychiatric Care, 54(3), 441452. https://doi.org/10.1111/ppc.12286 Aubin, S., Rosberger, Z., Hafez, N., Noory, M. R., Perez, S., Lehmann, S., ... & Kavan, P. (2019). Cancer!? I don't have time for that: impact of a psychosocial intervention for young adults with cancer. Journal of adolescent and young adult oncology, 8(2), 172189. https://doi.org/10.1089/jayao.2017.0101 Baxter, M. F., Newman, R., Longpre, S. M., & Polo, K. M. (2017). Occupational therapys role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy, 71(3), 7103090010P1-7103090010P7. https://doi.org/10.5014/ajot.2017.713001 Cancer Support Community (n.d.) Our Purpose. https://cancersupportindy.org/about-us/ourpurpose/ Center for Disease Control and Prevention. (2017). Cancer burden: Indiana. https://gis.cdc.gov/Cancer/USCS/DataViz.html Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Coss, D., Bass, J. D., & Lyons, K. D. (2022). Activity engagement after cancer in community-based survivors. Occupational Therapy In Health Care, 36(2), 141-151. https://doi.org/10.1080/07380577.2021.1923105 DionneOdom, J. N., Applebaum, A. J., Ornstein, K. A., Azuero, A., Warren, P. P., YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 18 Taylor, R.A., ... & Bakitas, M. A. (2018). Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology, 27(3), 969-976. https://doi.org/10.1002/pon.4603 Lim, K.H. & Iwama, M.K. (2011). The Kawa (river) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (pp. 117-135). Edinburgh, Scotland: Elsevier Churchill Livingstone. Keegan, T. H., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X. C., West, M. M., ... & Smith, A. W. (2012). Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. Journal of cancer survivorship, 6(3), 239-250. https://doi.org/10.1007/s11764-012-0219-9 Kim, Y., & Carver, C. S. (2019). Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship. Journal of Cancer Survivorship, 13(5), 749-758. https://doi.org/10.1007/s11764-019-00794-6 Metcalf, C. A., Arch, J. J., & Greer, J. A. (2017). Anxiety and its correlates among young adults with a history of parental cancer. Journal of psychosocial oncology, 35(5), 597613. https://doi.org/10.1080/07347332.2017.1307895 Morris, J., Turnbull, D., Preen, D., Zajac, I., & Martini, A. (2018). The psychological, social, and behavioral impact of a parent's cancer on adolescent and young adult offspring aged 1024 at time of diagnosis: A systematic review. Journal of adolescence, 65, 61-71. https://doi.org/10.1016/j.adolescence.2018.03.001 Patterson, P., McDonald, F. E. J., White, K. J., Walczak, A., & Butow, P. N. (2017). YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 19 Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer. Psychooncology, 26(9), 1285-1292. https://doi.org/10.1002/pon.4421 Penn, A., & Kuperberg, A. (2018). Psychosocial support in adolescents and young adults with cancer. The Cancer Journal, 24(6), 321-327. https://doi.org/10.1097/PPO.0000000000000339 Polo, K. M., & Smith, C. (2017). Taking our seat at the table: Community cancer survivorship. American Journal of Occupational Therapy, 71(2), 7102100010p17102100010p5. https://doi.org/10.5014/ajot.2017.020693 Spathis, A., Booth, S., Grove, S., Hatcher, H., Kuhn, I., & Barclay, S. (2015). Teenage and young adult cancer-related fatigue is prevalent, distressing, and neglected: it is time to intervene. A systematic literature review and narrative synthesis. Journal of adolescent and young adult oncology, 4(1), 3-17. https://doi.org/10.1089/jayao.2014.0023 Spathis, A., Hatcher, H., Booth, S., Gibson, F., Stone, P., Abbas, L., ... & Barclay, S. (2017).Cancer-related fatigue in adolescents and young adults after cancer treatment: persistent and poorly managed. Journal of adolescent and young adult oncology, 6(3), 489-493. https://doi.org/10.1089/jayao.2017.0037 Wallis, A., Meredith, P., & Stanley, M. (2020). Cancer care and occupational therapy: A scoping review. Australian Occupational Therapy Journal, 67(2), 172-194. https://doi.org/10.1111/1440-1630.12633 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 20 Appendix A Table 1 Post-survey Summative Response Survey Question Participant answers OT can help me do daily things without feeling tired or bad. I did not have OT but learned that OT can help with energy conservation. This would have been Please explain one thing you learned very helpful during treatment because I was always about occupational therapy (OT) tired and it was hard to get things done. OT would have helped my girlfriend with energy and self-care when she was too tired from treatment to do these things. I will go on more walks and take a break when it is Please explain how you will incorporate too much. self-care in your daily routine. journal 2-3 times a week and start going on more walks (2-3 times a week) as it gets nicer outside. I will hang out with my sister and friends more on Please explain how you will incorporate the weekend. social activities in your life. try to plan hanging out with at least 1 family member or friend a week. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 21 Go to social events like this one more often To be with people that also survived cancer. to be part of a group What did you hope to gain or learn to get a bigger understanding of social-wellness form attending this program? and sleep gain friendship and a break from the rest of the world Everything What was most helpful about this having a chance to hang out with people who have program? been through similar life events having some background information over the things that are happening today Find more dates to meet How could this program have been More people next time and something outside when more helpful? it's warm Having better meeting times YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 22 Morgan was great! She was super accommodating Please feel welcome to share any other and it gave me an opportunity to not have to worry comments, questions, about cooking and just have a chance to relax recommendations, etc. here. Had a lot of fun at the game night and would come again Figure 1 PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a Results YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 23 Appendix B DCE and Project Weekly Planning Guide at CSC Week DCE Stage 1 Orientation 01/10/202201/14/2022 Weekly Goal 1. 2. 3. 4. Orientation Office schedule Program development DCE assignments Objectives Tasks Meet with Lora Hays and Hunter Stafford and review my weekly goals and project. Train on front desk duties. Set up meetings with Lora and Hunter for check-in and set up meeting with Katie Polo (faculty mentor) to discuss project. Review MOU with Lora and Hunter and make appropriate changes if needed. Date complete 01/14/2022 Create a weekly meeting document with updates/goals/questions/rem inders. Propose dates for activities/sessions for project. Determine which colleges/hospitals, get contact information, and form initial email. Work desk 1/11 1-4PM Finalize MOU 2 01/17/202201/21/2022 Screening/ Evaluation 1. 2. 3. Program development Office schedule DCE assignments Begin marketing program planning DCE forum post by 01/14 at 11:55PM Finalize dates for activities/courses Add to literature review Reach out to colleges/hospitals. Review needs assessment from OTD 611 Create poster/flyer for program. Attend weekly meeting with Lora and Hunter to discuss program. Work office desk 01/18 14PM Complete literature review/needs assessment DCE forum post by 01/18 at 11:55PM and respond to 3 by 01/21 at 11:55PM 01/21/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 3 01/24/202201/28/2022 Implementat ion 1. 2. 3. Program Development Office schedule DCE assignments Marketing the program Outcome measure Theory/Framework Draft Introduction 24 Create outcome measure for pre-post attendance to events. 01/28/2022 Meet with Katie for update on DCE. Attend weekly meeting with Lora and Hunter to discuss program. Work desk 1/25 1-4PM Review theory/framework for project Submit draft Intro by 01/28 at 11:55PM 4 01/31/202202/04/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Background draft DCE forum post by 01/25 at 11:55PM and respond to 3 by 01/28 at 11:55PM Finalize outcome measures. 02/04/2022 Attend weekly meeting with Lora and Hunter to discuss program. Work desk 2/1 1-4PM Submit draft of background by 2/4 at 11:55PM 5 02/07/202202/11/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Start on content for educational session Start reaching out for donations Project Design 6 02/14/202202/18/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Continue working on educational session content DCE forum post by 2/1 at 11:55PM and respond to 3 by 2/4 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. 02/11/2022 Work desk 2/8 1-4PM Submit Project Design by 2/11 at 11:55PM DCE forum post by 2/8 at 11:55PM and respond to 3 by 2/11 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Work desk 2/15 1-4PM 02/18/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 7 02/21/202202/25/2022 8 02/28/202203/04/2022 9 03/07/202203/11/2022 Implementat ion Implementat ion Implementat ion 1. 2. 3. 1. 2. 3. 1. 2. 3. Program development Office schedule DCE assignments Program development Office schedule DCE assignments Program development Office schedule DCE assignments Continue working on educational session content Combined both populations to be one educational session and one social event 25 DCE forum post by 2/15 at 11:55PM and respond to 3 by 2/18 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. 02/25/2022 Meet with Katie for update on DCE. Work desk 2/22 1-4PM Midterm Midterm evaluation by 2/25 at 11:55PM Continue working on educational session content DCE forum post by 2/22 at 11:55PM and respond to 3 by 2/25 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Collect all donations Work desk 3/1 1-4PM and 3/5 form 9-12 Finalize content for educational session by 3/8 DCE forum post by 3/1 at 11:55PM and respond to 3 by 3/4 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Methods section Work desk 3/8 1-4PM 03/04/2022 03/11/2022 Lead educational session on 3/9 Finalize Methods section based on Faculty Mentor feedback by 3/8 10 03/14/202203/18/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Start on planning for Social Connectedness Event: Trivia Night Create VT for participants that could not come to the virtual educational session Outcomes DCE forum post by 3/8 at 11:55PM and respond to 3 by 3/11 at 11:55PM Attend weekly meeting with Lora and Hunter discuss program. Work desk 3/15 1-4PM Gather prize items and make categories Meet with Katie for update on DCE. 03/18/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 26 Send VT to participants by 3/18 Draft of Outcomes for faculty mentor due 3/18 11 03/21/202203/25/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Finalize everything for Social Connectedness Event: Trivia Night by 3/24 Set up virtual zoom meeting for participants Dissemination Plan 12 03/28/202204/01/2022 13 04/04/202204/08/2022 14 04/11/202204/15/2022 Implementat ion Discontinuat ion Disseminatio n 1. 2. 3. 1. 2. 1. 2. Program development Office schedule DCE assignments Program development DCE assignments Program development DCE assignments Start on dissemination binder DCE forum post by 3/15 at 11:55PM and respond to 3 by 3/18 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Dissemination Plan due 3/25 Work desk 3/22 1-4PM Lead virtual zoom meeting on 3/22 Lead Social Connectedness Event: Trivia Night on 3/25 DCE forum post by 3/22 at 11:55PM and respond to 3 by 3/25 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Work on results/discussion section in paper Work desk 3/29 1-4PM Outcomes DCE forum post by 3/29 at 11:55PM and respond to 3 by 4/1 at 11:55PM Attend meeting for final and turning in dissemination binder on 4/7 Continue working on dissemination binder Outcomes Complete binder Complete drafts Send final paper to Katie for edits 03/25/2022 04/01/2022 Begin Outcomes section 04/08/2022 Finalize outcomes section based on faculty mentor feedback DCE forum post by 4/5 at 11:55PM and respond to 3 by 4/8 at 11:55PM Attend weekly meeting with Lora and Hunter to get feedback on dissemination binder. Make final edits to paper and dissemination binder. 04/15/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 27 Final evaluation due by 4/15 Draft of abstract, summary, and conclusion section and abstract due 4/15 DCE forum post by 4/12 at 11:55PM and respond to 3 by 4/15 at 11:55PM  ...

... Refuge Ranch Mentor Training and Curriculum Development Focusing on Life Skills with Sensory Considerations Jacqueline Gunther May, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Laura Aust OTD, MS, OTR Gunther Refuge Ranch Capstone Abstract Refuge Ranch is a Christian-based non-for-profit that serves at-risk youth. The Ranch engages children through equine-assisted activities and other outdoor recreational services. Over the last fifteen years of operation the Ranch has paired children with mentors to create safe and healing relationships. Up to this point the Ranch has not had any form of training or curriculum for the mentors. A curriculum and resources was created to empower as well as educate the staff and volunteers; to promote more therapeutic relationships with the children the Ranch serves. 2 Gunther Refuge Ranch Capstone 3 Introduction Refuge Ranch is a Christian-based non-for-profit in Springfield, IL. The Ranch began its mission in 2008 as a small grassroots movement with a couple of volunteers and two horses serving the surrounding community through three free programs. The first program serves children 5-18 who are considered at-risk youth in the Bridges program, formerly known as bits of hope. The Ranch has two other programs that serve children with special needs called Freedom Reins and a partner program that helps women who have been through sex trafficking; this program is called Grounds of Grace. All of the programs are free of charge, and they do not limit services to any particular group. The only requirements are that children are willing and want to be there; a parent or legal guardian must accompany them on the property. The Bridges program allows Ranch activities, including but not limited to: riding, boating, ranch chores, vetting care, and rehabilitation work with the ranch animals. The Ranch can serve these populations thanks to grant sources, individual community member donations, and extensive community donors (primarily churches). The Ranch has grown tremendously in the last several years due to the support of its generous donors, this rapid growth and increased interest in serving the Ranch from volunteers and staff who do not all have the same background. It is hard to have training that covers all of the stakeholders' interests. The stakeholders would like the Ranch to offer services that are more measurable and are intentionally working with the childrens conditions. This project aims to develop and streamline a curriculum for volunteers to be educated on and inform session implementation. During the first eight weeks of the capstone project, a folder of session ideas with sensory considerations were created as well as three staff training sessions. These sessions Gunther Refuge Ranch Capstone 4 and materials was disseminated to the staff over the course of three training sessions. The staff then had two weeks to utilize the new knowledge and implement the session resources. This paper will outline in detail the project from start to finish. Starting with research and background information on the efficacy of equine-based activity for at-risk youth. The need for the program development at the Ranch and how the project was designed and implemented. Finishing with a final synopsis of the project outcomes and summary. Background Population The main population that this project served was the population with in the bridges program consisting of children that fit under the category of being at risk youth. As determined by the most recent survey of the Ranchs population, the primary diagnosis of these children are as follows: reactive attachment disorder (RAD), major depressive disorder (MDD), anxiety, attention deficit hyperactivity disorder (ADHD), and oppositional defiance disorder (ODD). Needs Assessment Over the years, as there have been more and more individuals involved in the Ranch's mission, it has become increasingly challenging to continue offering the same education level regarding client conditions to all Ranch mentors as there is no standardized training and is up to the individual to acquire any information about conditions as well as best practices. The staff currently receives horsemanship skills classes with a riding instructor. The staff then offers riding classes to those who volunteer to continue improving their horsemanship skills as they teach others. The Ranch is a religious organization and dedicates time to cultivating a community where spiritual-based leadership is encouraged and developed. However, the Ranch is lacks the ability to educate the populations that the Ranch is serving to both the staff and Gunther Refuge Ranch Capstone 5 volunteers and how to engage these individuals during session. This particular topic has been a concern of the board of directors in past years. Just recently, the Ranch has gotten to a place where they have become established in their new site and feel that with the help of an individual dedicated to creating a curriculum to educate the staff, it would be beneficial and necessary to continue the growth of the program. The Ranch currently employs seven staff whose job expectations are all very different; however, they do all interact on a one-on-one basis with the children in both programs every week. The staff usually will work with the same child two to four times a month for 90 minutes each session. They try to keep the same mentor with each child as possible for bonding purposes unless contraindicated by other concerning factors. Given the proximity to the children they are working with, it may be beneficial for the staff to understand the common conditions and the concerns of serving at-risk youth. The Ranch feels it does not currently have the necessary tools to create a streamlined form of education for the staff. Currently, the director Chris Daniels is the primary resource for education for the staff as she has served this population specifically for the past 25 years. Chris herself has a passion for trauma-based practices and education materials; she has some concerns regarding staff education as she's afraid it may impact the staffs ability to form a connection with the children if they are looking at them through a critical lens that focuses more on diagnoses or risk factors. Previous Research In recent years there has been a surge in the frequency and opportunity to provide therapeutic services in settings that allow the services to be assisted by animals (Palley et al., 2010). Animal-assisted therapy (AAT) has continued to grow in popularity and researchers highly promote it in accordance with the current literature. The term animal-assisted therapy Gunther Refuge Ranch Capstone 6 (AAT) can be used for any therapeutic intervention that is aided by an animal being present to provide a beneficial impact on the person receiving services such that it positively impacts the person's overall health or well-being (Palley et al., 2010). There are two types of animal interventions as defined by the current literature. The first of which is AAT which, a goaldirected intervention that is delivered by a health/human services professional with specialized expertise who utilizes the animal as an integral part of the treatment process (Delta Society n.d.). The second is animal assisted activities (AAA) which provides opportunities for educational, motivational, recreational and/or therapeutic benefits. Both AAA and AAT can be delivered in a wide variety of settings and is usually delivered by individuals who are trained and are associated with programs and animals that offer such services (Delta Society). Both terms are also common terms found within the literature however, their use is not standardized (Palley et al., 2010). AAA can be delivered in a wide variety of settings and is usually delivered by individuals who are specifically trained to work with animals and are associated with programs that offer such services (Delta Society). Although AAAs have incorporated a wide range of animals, including farm animals, equins, dolphins, canines, and many more however, the most common programs have focused on horses (Maujean et al., 2015). A large amount of the current research involves studying the therapeutic benefits of AAT/AAA with children (Charry-Snchez et al., 2018). Two separate metanalyses conducted by Hoagwood et al. (2017) and Charry-Snchez, et al. (2018) findings from both these these metanalyses suggest that the most common pediatric populations to receive AAT are: children with autism, cerebral palsy, down syndrome, and chronic pain disorders. Wilkie et al. (2016) also conducted a meta-analysis and determined that at-risk youth who participated in an equine therapy program improved overall functioning. Bass et al. (2009) found significant differences Gunther Refuge Ranch Capstone 7 between the groups of children that participated in therapeutic horseback riding for children, such as children with less sensory seeking, sensory sensitivity, inattention, distractibility, sedentary behaviors, and more social motivation. Hauge et al. (2014) found interventions to produce a perceived sense of more peer support and peer social support correlated to change in horsemanship skills. Brown et al. (2012) assessed the benefits of implementing a trauma training for individuals who worked with individuals with a history of trauma: findings of this study indicating that the training positively impacted the participants in all areas that were assessed. Ghafoori et al. (2019) found that the implementation of trauma-informed care treatment led to higher rates of treatment completion and better outcomes on the assessment. Mueller & McCullough (2017) determined that equine-assisted therapy can be beneficial for children with a history of trauma, particularly because it allows adolescents to moderate their arousal which is a focus of trauma intervention. Each of the studies this far have used different methods of implementation of AAT at the designated site. The study conducted by Pendry et al. (2014) was different in that it applied the Professional Association of Therapeutic Horsemanship International (PATH, Intl.) method as their intervention treatment. Naste et al. (2018) used ARC framework, which incorporates three core components as its primary means and justification for intervention: these components aim to target areas that are commonly seen as deregulated in individuals with previous exposure to trauma. The Ranch does not currently have a framework that it operates under in its implementation of AAA. However, the ranch is similar to the previously mentioned study conducted by Bass et al. (2009) it operates in twelve week seasons that engage the participants in Gunther Refuge Ranch Capstone 8 learning about horsemanship at the beginning and end of their training period. Furthermore, the research conducted by Hauge et al. (2014) has similar demographics to the Ranchs population as the participants gender, age, both settings having more female than male participants, fewer than 25 acres, and occasionally works in pairs of participants with one adult. Frame of Reference The Person-Environment Occupation (PEO) model focuses on the interaction between the person and the environment in a transactional fashion, implying that occupation engagement is dynamic. In this model, the person is viewed holistically and perceived to be impacted by internal and external forces, which are considered performance components (Cole & Tufano, 2008). In using this model, it was adapted, so the program replaces the person, education replaces the occupation, and effectiveness replaces occupational performance. See Figure 1. The environment was not replaced as a factor as it can hinder or promote the efficacy of any program development as necessary resources must be available to encourage successful growth; such resources can include: time, space, money, and animals. The program, in this case, contains the current programming staff and all stakeholders involved in the ranch, as they will be the implementers of any program development. Using this model for this project is particularly beneficial as the components included can be looked at over time to compare effectiveness as influenced by the variables listed above. Figure 1. Gunther Refuge Ranch Capstone 9 Project Design The project design was created by using the PEO as a guide. Thought the needs assessment it was determined that the main purpose of the project was staff education was the, it became important to assess what tools, resources and materials the ranch already has. A survey was created to measure the staffs current level of knowledge and perceived understanding of conditions, sensory systems, and different session ideas. The same survey served as a reassessment tool post-project implementation. The project was implemented through giving three educational sessions to the staff as well as creating session ideas that would help mentors guide children through activities that are more centered around conditions and skills the child is working on. The session ideas are accessible through two mediums hard copy in the ranches office or on Google docs. The session ideas are broken down into two folders with the folders being life skills and conditions. In the life skills folder there are three folders broken down labeled: initiation, self-regulation, and problem solving. The sessions are broken down into the five major conditions the Ranch serves in the conditions folder. Each session resource follows the same formatting starting with scripture that matches the session goals moving on to the Gunther Refuge Ranch Capstone 10 session goal, materials needed, steps to take during the session, debriefing questions, and sensory considerations. Each staff then had an opportunity to try the session guides and determine areas of difficulty with the materials or the implementation feedback was collected via a online form. The Ranch was closed though the beginning of April, which meant that there was only two weeks for true project implementation. However, the staff provided timely feedback after each training session and made requests for other materials they might be interested in having covered. Outcomes Since this is a non-traditional practice area and project design, there is currently no formal assessment that that would measure the efficacy of the project. For this reason, a Google form was created prior to the creation of the project and modified for post dissemination data collection. During the first few weeks of the project a google form was administered to the staff to assess the staf knowledge of the population they were serving at the Ranch, as well as the types of intervention sessions that the staff was participating in. The questions on the Google form included questions regarding familiarity with each other the five main conditions the ranch severs with the conditions being; MDD, ODD, Anxiety, RAD, and ADHD as well as information regarding sensory systems, types of sessions the staff were currently engaging in, and how they felt about their current sessions. This Google form also assessed the staffs buy into the project as they were one of the major stakeholders. The average years worked on the part of the staff was 2.3 years. On average before educational materials were provided to the staff the staff felt about 65% aware and knowledgeable of the conditions that the ranch is serving. 71% of the respondents said they Gunther Refuge Ranch Capstone 11 would like to know more information about the conditions they were serving at the ranch. Only 25% of the respondents knew how many sensory systems a person has. There was an even distribution of how many different types of sessions and how confident the staff were that they participated in different session ideas, with the mean response being that they felt they participated in various session forms 60% of the time. 67% of respondents said that they ran out of session ideas sometime during the season. The Google form was modified and re-administered post-intervention and dissemination of project materials. The second Google form reworded the initial questions and asked how opinions have changed since the staff have received the resources and training. The staff had the ability to use the session ideas for 18 sessions before a Google form was re-administered. After the intervention, it was determined that 100% of the staff found the training helpful, 85% of the staff found that they would routinely use the session ideas, 85% felt that they would not run out of session ideas. Summary The information from the needs assessment as well as from the current literature was approached from an occupational therapy perspective to create comprehensive training as well as resources for the mentors of Refugee Ranch. After a thorough review of the literature, the current standard for best practice is to set social and emotional goals that can facilitate through animal assisted activities. The project provided the staff with resources and education making specific goals for children by utilizing the data the ranch already collects from the families on the children and their particular backgrounds. During the first staff training, the staff was educated on how they are able to access the data collected by the Ranch. The next training went over what information is collected and dove into the common medical/mental health conditions the Ranch Gunther Refuge Ranch Capstone 12 serves through the Bridges program. Finally, the last training session focused on the session created formatting of the resources, and how best to access them. One hundred percent of the staff found that the training was helpful. Only seventy-five percent feel like they will routinely use the session ideas. The main takeaways from the free-response portion of the survey were that they wished sensory systems had been addressed more in-depth and found the project as a whole overall helpful. Conclusion Over the course of the capstone project. A training curriculum was created for the staff. The curriculum was disseminated over three training sessions, with each hour long. The initial plan was to disseminate to anyone who acted as a mentor, which included both the staff and volunteers. Since the season did not formally begin until the near the end of the project, it was challenging to coordinate a time to disseminate the information to the volunteer group. The information that was presented for the staff is available for the volunteer group. Along with the trainings, the staff received access to thirty guides sessions. The sessions are accessible through a google folder and are stored physically in the office. The materials are categorized in two sections: life skills and disorders. Within each session, there are sensory considerations that the mentors can take into account before engaging in the sessions. The site has benefited from the project by having more resources for the mentors to target and address specific concerns for the children and their family, as informed by the routine surveys the participants engage in. Other similar sites may benefit from creating materials and implementing them in a similar model. Several sites that work with animal-assisted therapy do not offer training to volunteers and it could be a future community-based practice for occupational therapy. Gunther Refuge Ranch Capstone 13 References Brown, S. M., Baker, C. N., & Wilcox, P. (2012). Risking connection trauma training: A pathway toward trauma-informed care in child congregate care settings. Psychological Trauma: Theory, Research, Practice, and Policy, 4(5), 507. Bass, M. M., Duchowny, C. A., & Llabre, M. M. (2009). The effect of therapeutic horseback riding on social functioning in children with autism. Journal of autism and developmental disorders, 39(9), 1261-1267. Charry-Snchez, J. D., Pradilla, I., & Talero-Gutirrez, C. (2018). Effectiveness of animalassisted therapy in the pediatric population: systematic review and meta-analysis of controlled studies. Journal of Developmental & Behavioral Pediatrics, 39(7), 580-590. Delta Society n.d. About animal-assisted activities and animal-assisted therapy. http://www.deltasociety. org/AnimalAssistedActivitiesTherapy. Hauge, H., Kvalem, I. L., Berget, B., Enders-Slegers, M. J., & Braastad, B. O. (2014). Equineassisted activities and the impact on perceived social support, self-esteem and selfefficacy among adolescentsan intervention study. International journal of adolescence and youth, 19(1), 1-21. Hoagwood, K. E., Acri, M., Morrissey, M., & Peth-Pierce, R. (2017). Animal-assisted therapies for youth with or at risk for mental health problems: A systematic review. Applied developmental science, 21(1), 1-13. Maujean, A., Pepping, C. A., & Kendall, E. (2015). A systematic review of randomized controlled trials of animal-assisted therapy on psychosocial outcomes. Anthrozos, 28(1), 23-36. Gunther Refuge Ranch Capstone 14 Mueller, M. K., & McCullough, L. (2017). Effects of equine-facilitated psychotherapy on posttraumatic stress symptoms in youth. Journal of child and family studies, 26(4), 11641172. Naste, T. M., Price, M., Karol, J., Martin, L., Murphy, K., Miguel, J., & Spinazzola, J. (2018). Equine facilitated therapy for complex trauma (EFT-CT). Journal of child & adolescent trauma, 11(3), 289-303. Palley, L. S., ORourke, P. P., & Niemi, S. M. (2010). Mainstreaming animal-assisted therapy. ILAR journal, 51(3), 199-207. Pendry, P., Carr, A. M., Smith, A. N., & Roeter, S. M. (2014). Improving adolescent social competence and behavior: A randomized trial of an 11-week equine facilitated learning prevention program. The journal of primary prevention, 35(4), 281-293. Wilkie, K. D., Germain, S., & Theule, J. (2016). Evaluating the efficacy of equine therapy among at-risk youth: A meta-analysis. Anthrozos, 29(3), 377-393. Gunther Refuge Ranch Capstone Wee k 1 DCE Stage (orientation, screening/evaluatio n, implementation, discontinuation, dissemination) Orientation/Surve y Distribution Weekly Goal Objectives Distribute Survey - - 2 3 4 5 15 Appendix A Develop Staff Training Program Development at IATP Have the initial staff training curriculum complete 1/3 Develop Staff Training Shadow and work with ATT and Speech Assessments Develop Staff Training Demo Floor Development Have the second staff training curriculum complete 2/3 Have the third staff training curriculum complete 3/3 Review and Revise Make Staff Training modification - Create survey Research Program developme nt Attend weekly staff meeting Determine on site schedules Material synthase Meeting for program developme nt IATP community resource and training center Tasks Begin to create staff training complete intro Date comple te 1/14/22 Clerical work and understandin g of non-forprofit organization Finish first half of the curriculum 1/21/22 1/28/22 2/4/22 2/11/22 Gunther Refuge Ranch Capstone Continue all IATP work 6 13 Begin Staff Dissemination of curriculum Finish and wrap up work at IATP Make any modifications or additions to staff training Second round of Staff Dissemination Solidify Resources to hand out make sure there is ease of access Third round of Staff Dissemination Implementation of Staff Training and Program Development Implementation of Staff Training and Program Development Revisions 14 Finalize Project 7 8 9 10 11 12 s for future employees, with the use of information from the google survey Make sure the curriculum is accessible 16 2/18/22 Make three corrections to the program Disseminatio n 2/25/22 Make sure the resources are accessible Disseminatio n 3/11/22 Have 7 clients per each staff member Have 7 clients per each staff member Make revisions to the project via feedback from the supervisor Continue to see clients and compile all relevant information 3/25/22 3/4/22 3/18/22 4/1/22 4/8/22 4/15/22 Gunther Refuge Ranch Capstone from the project for UIndy Doctoral Capstone Experience and Project Weekly Planning Guide 17  ...

... TAILORED ACTIVITIES IN A MEMORY CARE UNIT Using Tailored Activities to Reduce Behavioral Symptoms in a Memory Care Unit Michele Govern May, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alissia Garabrant, OTD, MS, OTR 1 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 2 Abstract Residents with dementia that demonstrate behavioral symptoms are highly prevalent in skilled nursing facilities (SNFs), particularly in memory care units. With the use of individualized activities, the Tailoring Activities for Persons with Dementia (TAP) program provides a non-pharmacological approach to reducing behaviors and decreasing caregiver burden for persons with dementia. TAP is primarily used in homes, but it was adapted for use in the memory care at Hamilton Trace Family-First Senior Living with five residents. TAP demonstrated great success in reducing and preventing behavioral symptoms in the residents. TAP principles were used to create resources to benefit all current and future residents by individualizing their care and improving their quality of life. The staff indicated high usefulness and likelihood to utilize the resources in the future. The positive results of this project indicate a promising non-pharmacological intervention to improve the quality of life of residents and staff in memory care units. TAILORED ACTIVITIES IN A MEMORY CARE UNIT 3 Using Tailored Activities to Reduce Behavioral Symptoms in a Memory Care Unit Introduction One of the most prevalent diseases in older adults is dementia, affecting nearly 50 million people worldwide (World Health Organization [WHO], 2020). Behavioral symptoms are common symptoms of the disease, affecting 50-80% of persons with dementia (PWD) (Gaugler et al., 2014), with the most common symptoms being anxiety, depression, agitation, delusions, and hallucinations (Bennett et al., 2019; Yang et al., 2020). Nearly two-thirds of residents in nursing homes have a diagnosis of dementia (Gaudler et al., 2014), with a high prevalence of behavioral symptoms among these individuals (Brown et al., 2015). DiBartolo et al. (2013) noted that these symptoms take away from the residents quality of life and can be harmful or disruptive to other residents or staff. To address these behaviors, non-pharmacological treatment should be the initial treatment option for these residents (Gaugler et al., 2014). The program developer completed the Doctoral Capstone Experience (DCE) in the memory care at Hamilton Trace Family-first Senior Living, which is a CarDon and Associates Inc. building located in Fishers, Indiana. This facility includes long-term care, rehabilitation, assisted living facility, and memory care. The therapy offered at this site includes occupational therapy (OT), physical therapy (PT), and speech therapy (SLP), all of which treat residents in memory care on a rotating schedule. At a given time, there is one registered nurse (RN) and two certified nursing aides (CNAs) working in the memory care. Residents in the memory care displayed behavioral symptoms consistently throughout the day with an increase in the afternoon, leading to increased staff burden. Additionally, staff members lacked the resources and knowledge on ways to engage residents meaningfully given their cognitive abilities. TAILORED ACTIVITIES IN A MEMORY CARE UNIT 4 CarDon and Associates Inc. aims to assist residents in the memory care with personalized activities by getting to know their experiences, interests, and needs (CarDon & Associates Inc., n.d.), however, this was initially not reflected in the activity options for the residents. Halfway through the DCE, the facility hired a memory care director who began engaging the residents in activities, but they were generic and unindividualized group activities. To provide the residents with individualized and meaningful engagement to reduce their behavioral symptoms, the program developer modified the Tailoring Activities for Persons with Dementia (TAP) program for use at this site. Gitlin et al. (2008) reported that the overall goal of TAP is to reduce behavioral symptoms of persons with dementia and reduce caregiver burden by utilizing individualized activities that match the persons capabilities and interests. The program developer engaged five residents that displayed the most significant behaviors in the TAP protocol. Following the success of the implementation, the program developer created resources that determined preferred activities for each resident, activity suggestions based on their Global Deterioration Scale (GDS) score, and suggestions to reduce resistance to care. This paper will address the benefits of utilizing individualized activities to reduce behavioral symptoms of individuals with dementia and staff burden in a memory care unit. Background Residents in nursing homes often experience occupational deprivation due to a lack of opportunities for continued growth and engagement (Mjorud et al., 2017; Sanetta et al., 2019). As a result, residents often demonstrate an increase in behavioral symptoms (Sanetta et al., 2019). A needs assessment was completed to better understand the effects that behavioral symptoms have on the residents and staff at Hamilton Trace and what is already in place to combat these symptoms. The memory care has 20 resident beds. The residents are evaluated by TAILORED ACTIVITIES IN A MEMORY CARE UNIT 5 an SLP and staged on the GDS, with most residents functioning at levels five to six, indicating moderately severe to severe cognitive declines. At CarDon facilities, dementia stages are associated with a CarDon Heart of Caring color, so once the resident is staged, their color is posted on their doorway to assist staff in understanding their needs. Nearly all 20 residents experienced behavioral symptoms to some degree. The staff lacked the knowledge to engage residents in meaningful and appropriate activities to target these symptoms. From the needs assessment, it was determined that there was a great need for management of behavioral symptoms for the residents to improve engagement, quality of life, and decrease staff burden. Following the needs assessment and a search of the literature, the program developer determined that the residents and the staff would benefit from a modified version of TAP. TAP has been primarily used in homes and involves three phases. The first phase is evaluation, which involves evaluating the PWDs preserved capabilities, physical environment, interests, and the caregivers communication and management techniques (Gitlin et al., 2008). Phase two of TAP is implementation when the program developer brainstorms three activity prescriptions based on the information from the evaluation and instructs the caregiver in using these activities with the PWD (Gitlin et al., 2008). The activity prescriptions consist of an activity, a goal, and a specific implementation technique, and they are reviewed and modified as needed during the sessions (Gitlin et al., 2008). The third phase of TAP is the generalization phase, when the program developer provides techniques to reduce behavioral symptoms during ADLs (OConnor et al., 2014). Developers designed TAP for use in the home setting, and results have been overwhelmingly positive (Gitlin et al., 2008; Gitlin et al., 2009; Marx et al., 2019; OConnor et al., 2014; OConnor et al., 2017). Gitlin et al. (2008) found that compared to a control group, the TAILORED ACTIVITIES IN A MEMORY CARE UNIT 6 PWD that went through all TAP sessions in their home demonstrated less shadowing, repetitive questioning, argumentation, agitation, and they had greater activity engagement and ability to keep busy (Gitlin et al., 2008; OConnor et al., 2017). Additionally, TAP has led to caregivers experiencing increased self-efficacy, reduced burden, being less upset with behavioral symptoms, and enhanced skills (Gitlin et al., 2008; Gitlin et al., 2009; Marx et al., 2019). Given the benefits that TAP has shown in homes, OTs have modified TAP for use in other settings, such as hospitals (Gitlin et al., 2016) and outpatient centers (Oliveira et al., 2019). Similar to home settings, TAP yielded benefits for the PWD, caregivers, and staff in these adaptations (Gitlin et al., 2016; Oliveria et al., 2019). Given the success of modifying TAP to work in settings other than the home, its high replication potential (Gitlin et al., 2009), and literature to support the use of individualized activities in long-term care facilities (Travers et al., 2016), the program developer modified TAP to work in a residential care facility. Gaugler et al. (2014) identified individualized activities as an effective nonpharmacological method for managing behavioral symptoms in long-term care. In a review of seven randomized controlled studies and one non-randomized controlled study, Mohler et al. (2018) identified limitations in studies that utilized tailored activities to reduce challenging behavior and improve the quality of life for PWD in long-term care. Mohler et al. (2018) indicated that in seven of the studies, the nursing staff was not trained on the use of activities which led to a lack of day-to-day carryover in the other studies. The program developer addressed this shortcoming with TAP by training the RNs and CNAs on the use of activities, frequency, grading suggestions, and appropriate timing. Mohler et al., 2018 recommended that future research focus on the methods used to select appropriate activities for residents. The program developer did so by completing an TAILORED ACTIVITIES IN A MEMORY CARE UNIT extensive protocol for evaluating and brainstorming activities that specifically matched the residents abilities. Lastly, while the activities in the studies reviewed by Mohler et al. (2018) were tailored to the PWDs interests, they did not vary substantially from one another based on the residents abilities. The program developer addressed this weakness by creating resources that made suggestions for how to modify commonly preferred activities based on each dementia stage. Theory and Frame of Reference Allens Cognitive Levels frame of reference (FOR) was used to guide the implementation of TAP in the memory care. This FOR focuses on the role of cognition, habits, and routines while analyzing activities (Cole & Tufano, 2008). A vital component of this FOR is its belief in task equivalence, which proposes that providers use tasks with similar physical and cognitive demands to predict performance on activities (Cole & Tufano, 2008). The program developer followed the TAP protocol and used the Allens Cognitive Levels Screen (ACLS) to evaluate the residents current cognitive functioning. As outlined by Gitlin et al. (2009), the program developer used the ACLS score to then create meaningful activities that matched their abilities to maximize each residents success and engagement. Using this FOR, the program developer highlighted TAP's principles of providing activities that best meet PWD abilities to maximize their occupational performance (Gitlin et al., 2009). The Person-Environment-Occupation (PEO) model was also used during the implementation of the program. This model aims to maximize the fit between the person, their desired occupations, and their environment (Cole & Tufano, 2008). The interaction of these three components results in their occupational performance, maximized when all three parts are working together and minimized when there is a disruption in one or more components 7 TAILORED ACTIVITIES IN A MEMORY CARE UNIT (Cole & Tufano, 2008). Prior to the implementation of TAP, the residents at Hamilton Trace experienced declining physical and cognitive functions in an unfamiliar environment, and their opportunities for occupations were not meeting their needs for fulfillment and expression. The combination of these components minimized their occupational performance and contributed to behavioral symptoms. The PEO model is often used with the implementation of TAP (Gitlin et al., 2008; Marx et al., 2019) by ensuring the PWDs environment is conducive to the activities. For example, the program developer provided environmental and setup instructions for the activities to the staff to ensure the residents could meaningfully engage. Project Project Design The TAP protocol was completed with five residents that exhibited the most frequent behavioral symptoms. The program developer then utilized TAP principles to create resources for the memory care staff to engage all of the residents in meaningful individual and group activities to reduce behaviors. The TAP creators adapted the behavioral symptom checklist from the Neuropsychiatric Inventory Questionnaire (NPI-Q), a valid tool for assessing behavioral symptoms for PWD (Jonghe et al., 2003). The program developer kept all items from the original behavioral symptom checklist and added the requirement to indicate the frequency of the behaviors and when the behavior occurs, see Appendix A. Following observation and discussion with the nursing staff to choose residents to involve in the TAP protocol, a member of the nursing staff filled out the behavioral symptom checklist for each of the five residents to determine which behaviors to target and at which time of day. 8 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 9 The program developer created a resident engagement measure to determine how engaged the resident was in each activity and completed it after each time a resident was offered a preferred activity. This measure noted refusals and length of engagement time, and it included four positive and four negative engagement factors based on factors from the Observational Measurement of Engagement (OME) (Cohen-Mansfield et al., 2009), see Appendix B. The program developer created a mood measure used to track positive emotions and behavioral symptoms immediately before, during, immediately after, 10 minutes after, and 30 minutes after participating in an activity. The positive emotions used to measure mood were determined by definitions created by Green and Reid (1996). The behavioral symptoms included were based on the behavioral symptom checklist, see Appendix C. The mood measure was used to determine the effect that preferred activities had on improving mood and reducing behavioral symptoms. Following the implementation of the activities, the program developer provided the memory care staff with resources to be used in the future. The memory care director, director of nursing, the regional director of all CarDon memory cares, one RN, and six CNAs completed a survey on how useful they found the resources and the likelihood they are to use them in the future, see Appendix D. Implementation Five residents were chosen to participate in the TAP protocol based on observation and suggestions from the staff about the frequency of their behaviors. The program developer completed the TAP protocol with one resident at a time. One staff member completed the behavioral symptom checklist on each resident to determine which behaviors to target and at TAILORED ACTIVITIES IN A MEMORY CARE UNIT 10 what time of the day. Next, each resident was evaluated with the ACLS and Mini-Mental State Examination (MMSE) to determine cognitive abilities and mental status. The program developer administered the Activity Inventory with the residents family members to assess the resident's past and current interests. Based on the information gathered in the assessments, three to four activity prescriptions were created that matched the resident's capabilities. The program developer continued to do the activities throughout the weeks and completed the mood measure and resident engagement measure each time a resident refused or participated in an activity. Activity prescriptions were presented to the RN and CNAs that described the activity, suggested timing, materials needed, cues, setup, and duration. This process was repeated with each of the five residents in the program. Halfway through the DCE, a new memory care director was hired to improve programming and group activities in the memory care unit. The program developer collaborated with the new director to determine resources that would be useful based on the TAP principles. Based on this, the following resources were created: A preferred activities binder with activity suggestions for each resident in the memory care based on their interests and abilities; group activity suggestions with how to modify each activity for residents at each GDS level; resistance to care resource to reduce behaviors during ADLs for the nursing staff; and activity ideas for future residents based on their GDS level and interests. The program developer held an inservice to present the materials to the memory care staff, who then completed the satisfaction survey on the resources. The program developer then disseminated to the therapy staff the results of the TAP protocol, the resources created, and the role that the therapy staff can have in maintaining the longevity of the resources. Project Outcomes TAILORED ACTIVITIES IN A MEMORY CARE UNIT 11 The program developer analyzed the results of the resident engagement measure to determine how engaged the residents were during preferred activities. Table 1 indicates how many times activities were provided to the resident, the number of refusals, the average length of engagement, and the median value across all four positive and all four negative engagement factors for each activity. Due to the low sample size of the ordinal data obtained from the Likert Scale measures, using the median as the measure of central tendency was appropriate (Sullivan & Artino, 2013). The results indicate a high level of positive engagement and low level of negative engagement in four of the five residents, demonstrating how appropriate the preferred activities were matched to their interests and abilities to achieve greater engagement. The use of individualized activities is therefore supported in these results to increase resident engagement. Resident three demonstrated a low median for positive engagement factors. The engagement measure was likely inappropriate given their cognitive functioning as indicated by the ACLS. The program developer provided the staff with education on sensory-based activities that they could engage resident three in following this finding, given the benefits that sensory-stimulating activities can have on residents functioning at lower levels of dementia (Marx et al., 2017). Table 1 Results of Resident Engagement Measure Resident ACLS score 1 3.6 Number of times activities were introduced 19 Number Average of length of refusals time engaged in minutes Median for positive engagement factors Median for negative engagement factors 2 4 1 20.2 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 12 2 3.0 18 1 16 4 1 3 1.6 10 0 2 1 2 4 3.4 12 2 20.2 4 1 5 3.0 8 1 15 3 1 The results of the mood measure were analyzed to determine the overall trend in residents moods and behaviors before, during, and after participating in a preferred activity. Table 2 illustrates these results. The behavioral symptoms that were targeted for each resident as indicated by the behavioral symptom checklist are included. The overall trend in behavioral symptom change was determined by an increase or decrease in behaviors before the activity to immediately after the activity. If the overall change was a decrease in behaviors, the average duration of how long the reduction of behaviors occurred after the activity is noted. Lastly, the overall change in positive mood was determined by an increase or decrease in positive mood indicators before and after the activity. The results indicate an overall decrease in behaviors in four of the five residents surrounding the activities, likely due to the activities targeting the time of day when each resident demonstrated the most behaviors. The activities did not appear to decrease the behaviors for longer than 10 minutes, and two residents continued the behaviors immediately after completion of the activities. This demonstrates the need for increased carryover from the staff to ensure the continuation of activities for longer effects on the residents behaviors. This result does however support the use of activities to prevent well-known behaviors from occurring. Additionally, four of the five residents demonstrated improved mood while completing the activity. Resident three TAILORED ACTIVITIES IN A MEMORY CARE UNIT 13 did not demonstrate any decrease in behaviors, likely due to the lack of engagement as noted in Table 1. Table 2 Results of Resident Mood Measure Resident 1 2 3 4 5 Behavioral symptoms targeted Agitation, apathy, dysphoria, argumentation, wandering Wandering, agitation, irritability, aberrant motor disturbances Agitation, dysphoria, euphoria, restlessness, frequent vocalizations Repetitive questioning, anxiety, frequent vocalizations Wandering, agitation, irritability Trend in behavioral symptom change Decrease Duration of change in behaviors (mean) 10 minutes Trend in positive mood change Increase Decrease Immediately after Increase Neutral N/A Neutral Decrease 10 minutes Increase Decrease Immediately after Increase The memory care director, director of nursing, regional director of CarDon memory cares, six CNAs, and one RN completed a satisfaction survey for each resource provided following the in-service to present the resources. Table 3 describes the median for how useful they found the resource and the median for the likelihood they will use the resource in the future. TAILORED ACTIVITIES IN A MEMORY CARE UNIT 14 The results indicate that overall, the staff found the resources to be very useful and they are very likely to use them in the future. Additional comments were provided on the survey, indicating their great appreciation, how beneficial they find the resources, and their gratitude. Table 3 Results of Staff Satisfaction Surveys Resource Preferred Activities Resource Resistance to Care Resource Group Activities Ideas Future Activity Ideas Resource Usefulness of the resource 5 5 5 5 Likelihood for using the resource in the future 5 5 5 5 Summary A goal of CarDon Family-First Senior Living is to provide residents in memory care with personalized activities that are based on their individual needs and interests (CarDon & Associates Inc., n.d.). This was accomplished by implementing a modified TAP protocol and creating individualized resources for the memory care staff at Hamilton Trace Family-First Senior Living. The goals of TAP are to reduce the behaviors of persons with dementia and caregiver burden (Gitlin et al., 2008). Brown et al. (2015) indicated how prevalent a diagnosis of dementia is in long-term care facilities, along with a high prevalence of behavioral symptoms in these residents. Through a needs assessment, a similar experience at Hamilton Trace was discovered, leading to a great need for a nonpharmacological program to reduce residents behavioral symptoms in the memory care. TAP has shown to be effective with clients in the home, hospital, and outpatient settings (Gitlin et al., 2008; Gitlin et al., 2016; Oliveira et al., TAILORED ACTIVITIES IN A MEMORY CARE UNIT 15 2019), and given the results following its use at Hamilton Trace, it also demonstrates benefits in memory care units. Following the implementation of the TAP protocol with five residents in the memory care, the residents demonstrated improved mood, indicated by a reduction of behavioral symptoms following the individualized activities. The results suggest that implementing the activities before known behavioral symptoms occur can reduce their occurrence and improve mood while the symptoms are happening. Resources were then created based on TAP principles that the memory care staff can use to implement preferred activities for all residents to increase meaningful engagement, quality of life, and reduce resistance to care. Following an in-service to describe these resources, the memory care staff reported the resources are highly useful and a great likelihood they will utilize the resources in the future. Conclusion The burden on nursing staff in memory care units can be reduced by providing individualized care to residents using the TAP protocol. The TAP protocol accomplishes this by reducing and preventing behavioral symptoms of the residents. Resources and training were provided to the memory care staff for use with current and future residents. Additionally, the resources were provided to the regional memory care director for use at other CarDon facilities. By completing the TAP protocol, the program developer learned how beneficial individualized care is, especially for persons with dementia. Additionally, the program developer discovered the importance of appropriate cueing, set-up, and grading of activities to increase engagement with each resident. TAILORED ACTIVITIES IN A MEMORY CARE UNIT 16 The American Occupational Therapy Association (AOTA) (2015) describes OTs role in a skilled nursing facility to include program development to instruct staff on ways to reduce the behaviors of residents with dementia. Creating the resources and advocating to the therapy and memory care staff illustrated what additional role OTs should have in a skilled nursing facility to further the profession of OT. Additionally, the therapists at Hamilton Trace mostly utilized a maintenance approach with residents with dementia. The program developer had the opportunity to advocate for the therapists to expand their approach to include health promotion and prevention approaches to meet all the needs of the residents. OTs should continue to be utilized in memory care units as consultants for how to reduce behaviors in the residents with a nonpharmacological approach with their unique skillset. TAILORED ACTIVITIES IN A MEMORY CARE UNIT 17 Appendix A Behavioral Symptoms Checklist (Adapted from NPI-Q) Resident: __________________________ Staff member filling out survey: ______________________ How often does the resident experience the following behavioral symptoms, and do they routinely occur at certain times in the day? Behaviors Aberrant motor disturbances: Doing things over and over, repeatedly picking at things, pacing without purpose Aberrant vocalization: scream, talk excessively or make strange noises, frequent verbal outbursts Aggression: Shout angrily, slam doors Aggressive to others physically Agitation: Hard to handle, uncooperative, rejection to care, restless in general, asks repetitive questions/statements Anxiety: Nervous, worried, frightened for no apparent reason, tense or fidgety Apathy/indifference: Lost interest in the world around him/her, lost interest in things, difficult to engage Appetite and Eating: Change in appetite, weight, or eating habits Delusions: Beliefs that are not true (ex. Others are stealing or want to harm person) Disinhibition: Act impulsively, do or say things that are embarrassing, say things hurtful to others Doing things harmful to him/herself Dysphoria: Sad, depressed, crying, low spirits Elation/Euphoria: Too cheerful Hallucinations: Hearing or seeing false voices or visions Irritability/Lability: Easily disturbed, moods very changeable, abnormally impatient, rapid emotional changes, cranky Sleep disorders: wander at night, up all night, go into others rooms at night Wandering: Roaming without purpose, wandering into others rooms Resistive to care during ADLs Argumentative with others in conversation 0 times 1-3 times 4-6 times 7+ times Specific time of day they experience it, if so TAILORED ACTIVITIES IN A MEMORY CARE UNIT Appendix B Resident Engagement Measure Activity: _________________________________________ Number of time completing this activity: Date: Refusal Did the resident refuse the activity? Were you able to redirect them? If so, what worked: Duration Amount of time in minutes they were visually focused, physically occupied, had body turned towards the stimulus: Positive Indications of Engagement How often did these actions occur during the activity: Held the stimulus (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Manipulated the stimulus (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Talked about the stimulus (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Did the resident ask questions or demonstrate curiosity? (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Negative Indications of Engagement Inappropriately manipulated the stimulus (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time 18 TAILORED ACTIVITIES IN A MEMORY CARE UNIT Did the resident appear bored or disinterested? (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Did the resident resist attempts to participate in the session? (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time Was the resident disruptive? (1)__ none of the time (2)__a little of the time (less than 16 seconds (3)__ some of the time (4)___ most or all of the time 19 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 20 Appendix C Mood Measure Activity: ___________________________ Date: __________ Number of time completing activity: ___ Did the resident demonstrate: Behavioral symptom: Aberrant motor disturbances: Doing things over and over, repeatedly picking at things, pacing without purpose Aberrant vocalization: scream, talk excessively or make strange noises, frequent verbal outbursts Aggression: Shout angrily, slam doors Aggressive to others physically Agitation: Hard to handle, uncooperative, rejection to care, restless in general, asks repetitive questions/statements Anxiety: Nervous, worried, frightened for no apparent reason, tense or fidgety, afraid to be apart from caregiver Apathy/indifference: Lost interest in the world around him/her, lost interest in things, difficult to engage Appetite and Eating: Change in appetite, weight, or eating habits Delusions: Beliefs that are not true (ex. Others are stealing or want to harm person) Disinhibition: Act impulsively, do or say things that are embarrassing, say things hurtful to others Doing things harmful to him/herself Dysphoria: Sad, depressed, crying, low spirits Elation/Euphoria: Too cheerful or happy Hallucinations: Hearing or seeing false voices or visions Irritability/Lability: Easily disturbed, moods very changeable, abnormally impatient, rapid emotional changes, cranky Sleep disorders: wander at night, up all night, go into others rooms at night Wandering: Roaming without purpose, wandering into others rooms during day Resistive to care during ADLs Argumentative with others in conversation Other: Before During Immediately 10 after minutes after 30 minutes after TAILORED ACTIVITIES IN A MEMORY CARE UNIT Positive moods Appropriate socialization Smiling Laughing Reported enjoyment Positive talk about activity Other: Before During Immediately 10 30 after minutes minutes after after 21 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 22 Appendix D Employee Resource Satisfaction Survey Preferred Activities Resource This resource is useful for me: (1) Strongly Disagree (2) Disagree (3) Undecided (4) Agree (5) Strongly Agree Likelihood of utilizing this resource in the future: (1) Definitely not (2) Probably not (3) Possibly (4) Probably (5) Definitely Individual Activity Ideas Resource This resource is useful for me: (1) Strongly Disagree (2) Disagree (3) Undecided (4) Agree (5) Strongly Agree Likelihood of utilizing this resource in the future: (1) Definitely not (2) Probably not (3) Possibly (4) Probably (5) Definitely Group Activity Resource This resource is useful for me: (1) Strongly Disagree (2) Disagree (3) Undecided (4) Agree (5) Strongly Agree Likelihood of utilizing this resource in the future: (1) Definitely not (2) Probably not (3) Possibly (4) Probably (5) Definitely Resistance to Care Resource This resource is useful for me: (1) Strongly Disagree (2) Disagree (3) Undecided (4) Agree (5) Strongly Agree Likelihood of utilizing this resource in the future: (1) Definitely not (2) Probably not (3) Possibly (4) Probably (5) Definitely Additional comments: ______________________________________________________________________________ ______________________________________________________________________________ TAILORED ACTIVITIES IN A MEMORY CARE UNIT 23 References American Occupational Therapy Association [AOTA]. 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The American Journal of Psychiatry, 17(4), 299-307. https://doi.org/10.1097/JGP.0b013e31818f3a52 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practice approach. Thorofare, NJ: SLACK Incorporated. DiBartolo, M. C., Vozzella, S. M., & Rebert, A. N. (2013). The club concept: Targeting behavioral issues in a residential setting for cognitively impaired adults. Journal of Gerontological Nursing, 39(10), 46-51. https://doi.org/10.3928/00989134-20130627-01 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 24 Gitlin, L. N., Winter, L., Burke, J., Chernett, N., & Dennis, M. P. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. The American Journal of Geriatric Psychiatry, 16(3), 229-239. https://doi.org/10.1097/JGP.0b013e318160da72 Gitlin, L. N., Winter, L., Earland, T. V., Herge, E. A., Chernett, N. L., Piersol, C. V., & Burke, J. P. (2009). 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Tailored activities to reduce neuropsychiatric behaviors in persons with dementia: Case report. The American Journal of Occupational Therapy, 73(2), 7302205160p1-7302205160p9. https://doi.org/10.5014/ajot.2019.029546 TAILORED ACTIVITIES IN A MEMORY CARE UNIT 25 Gaugler, J. E., Yu, F., Davila, H. W., & Shippee, T. (2014). Alzheimers disease and nursing homes. Health Affairs, 33(4), 650-657. https://doi.org/10.1377/hlthaff.2013.1268 Mjorud, M., Engedal, K., Rosvik, J., & Kirkevold, M. (2017). Living with dementia in a nursing home, as described by persons with dementia: A phenomenological hermeneutic study. BMC Health Services Research, 17(93). https://doi.org/10.1186/s12913-017-2053-2 Mohler, R., Renom, A., Renom, H., & Meyer, G. (2018). Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care. The Cochrane Database for Systematic Reviews, 2(2), CD009812. https://doi.org/10.1002/14651858.CD009812.pub2 OConnor, C. 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... SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 1 Implementation of a sensory-based program for older adult with dementia in a long-term care setting A. Dresden Glover May 4, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Brenda S. Howard, DHSc, OTR, FAOTA SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 2 Abstract Many older adults with dementia experience neuropsychiatric symptoms such as depression, anxiety, agitation, and more (Silva et al., 2018). Due to changes in how their brains interpret the world around them, caregivers must adapt how they create a safe and engaging environment with appropriate activities (Houston & Christie, 2018). To facilitate this environment, I have created a training manual to help staff understand how the sensory systems change for people with dementia, and an intake questionnaire to help staff know their residents daily preferences to provide individualized care. I also provided sensory-based activities made specifically for residents with dementia. Following an in-service presentation of the training manual, 3 out of 7 staff members demonstrated increased understanding of using a sensory-based approach when working with residents with dementia. The site could benefit from future occupational therapy services to facilitate increased quality of life and activity engagement of residents with dementia. SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 3 Implementation of a sensory-based program for older adults with dementia in a long-term care setting People with dementia experience problems with memory, difficulty learning new information, and can have mood disturbances such as agitation, aggressive behavior, and apathy (Silva, 2018). For people with dementia, their brains change the way they interpret the sensory input from the world around them (Champagne, 2018). As the condition progresses, people with dementia become less and less able to complete their activities of daily living (ADL), such as bathing, grooming, toileting, and eating independently, and their quality of life can decrease significantly (Silva et al., 2018). Four Seasons Senior Living Community in Columbus, Indiana is a retirement community with independent apartments, long-term care, and skilled nursing (A. Sands, personal communication, January 10, 2022). Within the Health Center of the facility, there are approximately 55 beds for residents, many of whom require assistance for their daily activities due to decreased safety awareness secondary to progressive dementia. Although the residents at Four Seasons are welcome to participate in daily activities in groups or individually, the activities director sometimes finds it difficult to find appropriately engaging activities for residents with dementia (L. Ludwig, personal communication, January 13, 2022). Some residents wander or become anxious or agitated, and can sometimes disrupt the activities of other residents. Researchers report that engaging people with dementia using individualized sensory-based activities can help them reduce their agitation, aggression, and increase their mood and their ability to participate in their ADLs (Bernardo, 2018; Jensen & Padilla, 2017; Silva et al., 2018). This scholarly report will describe how dementia affects older adults in an assisted living SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 4 facility, and how using a sensory-based approach can increase wellness and quality of life. Specifically, this report will detail the creation of a daily preferences questionnaire, the creation of a training manual on the use of a sensory-based approach to working with residents with dementia, and the development of sensory-based activities. Together, these three components target the quality of life of residents with dementia at Four Seasons Health Center. I will describe the design, the implementation, and the outcomes of the use of these interventions. Background Alzheimers Disease AD is the most common form of dementia and irrevocably changes the brain over several years (Alzheimers Association, 2022; World Health Organization, 2020). As the condition progresses, symptoms manifest as memory loss, confusion, personality changes, and a loss of interest. People with dementia experience deficits in orientation, learning capacity, language, and judgment (Strm et al., 2016). Ultimately, the condition affects basic bodily functions such as swallowing. As the condition progresses, people with dementia become less and less able to complete their ADLs (American Occupational Therapy Association [AOTA], 2020; Silva et al., 2018). In addition to problems with memory and a limited capacity to learn new information, common symptoms of dementia include eating problems, abnormal or repetitive vocalizations, wandering, and mood disturbances such as agitation, aggressive behavior, and apathy (Silva, 2018; Strm et al., 2016). In long-term care facilities, many residents with dementia spend a lot of time asleep, withdrawn, and apathetic (Sposito et al., 2017). People with AD can experience changes in mood and personality. These changes include symptoms of depression and anxiety, and the person can become irritable, agitated, and aggressive (Alzheimers Association, 2022). SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 5 Sometimes people with dementia can experience an increased agitation in the late afternoon or early evening known as sundowning (Forbes & Gresham, 2011). These symptoms result in a decrease in quality of life for the person with dementia and an increase in the burden of caregivers (Silva et al., 2018). Non-pharmacological therapy includes occupational therapy (OT), in which the practitioner develops individualized treatment sessions targeted toward behavioral and mood management, increasing ADL participation, and ultimately, quality of life (Bernardo, 2018; Jensen & Padilla, 2017). OT practitioners can help older adults with dementia engage in their daily occupations, which help bring a sense of purpose and identity to a persons life (AOTA, 2020). Sensory modulation in older adults with dementia Throughout the progression of dementia, the brains of older adults change and interpret the world around them differently than older adults without dementia (Champagne, 2018; Houston & Christie, 2018). Their brains interpret the visual, auditory, and other sensory input in ways that can be confusing for the person with dementia, and because they have difficulty communicating, they may not be able to describe what they perceive (Champagne, 2018). What they perceive may make them feel unsafe, disoriented, and confused, which can lead to agitation, anxiety, or depression (Champagne, 2018). It is important to create a home-like environment which provides safety and comfort for the residents with dementia (Champagne, 2018). When using a sensory-based approach, the caregiver can set up the environment in a way that makes it easy for the brain to interpret correctly (Champagne, 2018; Padilla, 2011). For example, increasing lighting to reduce shadows can help the person with dementia who may interpret the shadowy corner as a stranger standing in the coroner. Caregivers who use a SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 6 sensory-based approach can also identify triggers of agitation, and either mitigate these triggers or avoid the particular activity altogether. For example, a person with dementia may become agitated during bathing. The caregiver realizes that the person becomes especially agitated during transfers into the shower, which leads to a very difficult bathing session. The caregiver might decide in the future that avoiding these transfers is best, and that a sponge bath may be a better option. Utilization of a sensory-based approach helps reduce the aspects of dementia which decrease the quality of life of the person with dementia (Champagne, 2018). Older adults with dementia in a long-term care setting may also experience sensory deprivation. When the brain of a person with dementia has little or no sensory input, the person can experience confusion, disorientation, and emotional dysregulation (Champagne, 2018). Researchers report that sensory-based activities are effective in decreasing symptoms of anxiety and depression for people with dementia (Moghaddasifar et al., 2018). Sensory stimulation can help reduce behavioral problems such as agitation, wayfinding, and aggressions (Kim et al., 2012). These types of activities can be useful for people with a neurocognitive condition because they do not require high levels of cognition to participate (Moghaddasifar et al., 2018). Researchers found that residents demonstrated increased engagement in their tasks following sensory-based activities (Sposito et al., 2017). These activities can also improve mood, emotional wellbeing, and occupational engagement (Haigh & Mytton, 2016; Snchez et al., 2016). Although the effects are typically short-lived, researchers found that residents demonstrated increased engagement in their tasks following sensory-based activities (Snchez et al., 2016; Silva et al., 2018; Sposito et al., 2017). A critical component of sensory stimulation is the focus on individualization. Researchers SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 7 report strong evidence for person-centered interventions (Jensen & Padilla, 2017). When caregivers in institutions use person-centered care, they account for hearing or vision loss and play the music that residents prefer (Lopis et al., 2021). Maseda et al. (2018) found participants experienced immediate improvements in mood and behavior when the therapist took into account each participants preferences and interests. Researchers report that personalized care helps staff learn more about their residents and their abilities, which leads to better communication and trust between caregivers and residents (Bunn et al., 2018). When caregivers and therapists understand their residents interests and values, they can help their residents engage more with their environment and increase their quality of life (AOTA, 2020). Needs Assessment Four Seasons Senior Living Community is a retirement community with independent apartments, long-term care, and skilled nursing (A. Sands, personal communication, January 10, 2022). Within the Health Center of the facility, there are approximately 55 beds for residents, some of whom require skilled nursing while recovering from surgery, illness, or hospitalization. Other residents require assistance for their daily activities due to decreased safety awareness secondary to progressive dementia. My interest relating to dementia lies in improving mood among residents with dementia by using a sensory-based approach to increase quality of life. Residents within the Four Seasons Health Center can participate in daily scheduled activities in groups, or use the activity room individually (L. Ludwig, personal communication, January 13, 2022). The activities director, Loni, reported she requires assistance with providing appropriately engaging activities for residents of varying levels of cognition and physical ability. Sometimes residents experience bouts of agitation and require considerable effort from staff to reduce these moods. Wintertime is particularly difficult because residents cannot participate in SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 8 outdoor activities which Loni finds to be a favorite activity for her residents (L. Ludwig, personal communication, January 20, 2022). Additionally, Loni reported staff occasionally will ask her for advice on activities to do during weekends. Not all residents participate in scheduled activities, which can lead to being socially withdrawn and experiencing a physical decline (L. Ludwig, personal communication, January 20, 2022; Sposito et al., 2017). With this project, I developed a three-pronged program which addresses the sensory needs of residents with dementia. I developed a questionnaire to determine the daily preferences, which includes a sensory-based component, of the residents. This questionnaire ensures that activities are individualized for the residents. I also provided a training manual to educate staff on how to provide a safe and engaging environment using a sensory-based approach, and to instruct on the use of the activities. I created activities to assist the activities director and staff to find appropriate, individualized, sensory-based interventions to help reduce agitation, depression, apathy, and to increase wellbeing. The sensory-based activities addressed tactile, proprioceptive, vestibular, visual, auditory, and olfactory senses (Champagne, 2018). I created these components specific to the needs of residents and staff at Four Seasons Health Center, while also being sustainable for future individuals with dementia at this site. Theoretical Framework Lived Environment Life Quality Model In order to guide my professional reasoning in my Doctoral Capstone Experience (DCE), I used the Lived Environment Life Quality Model (LELQ) and the Sensory Integration frame of reference. Researchers developed the LELQ model to help occupational therapy (OT) practitioners who work with people with dementia in institutions (Wood et al., 2017). In the LELQ model, OT practitioners focus on the lived environment and context in order to improve SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 9 the quality of life for the people with dementia. The lived environment includes the caregiving microsystem, the person with dementia, and the environmental press (Wood et al., 2017). The caregiving microsystem describes the activity situations, such as meals and activity groups. The person with dementia represents the occupational profile and the current preferences and needs of the resident. The emergent environmental press describes the interaction between the person with dementia and the environment (Wood et al., 2017). The quality of life outcomes and indicators include time use (i.e. occupational engagement), the ability to function, and relative being (e.g. positive emotional experiences). Sensory Integration Frame of Reference People with dementia interpret the world through their senses differently than people without dementia (Champagne, 2018; Houston & Christie, 2018). For my project, I viewed the residents lived environment and personal contexts through the frame of reference of Sensory Integration. I determined which sensory aspects of the environment and context minimize distractions or maximize stimulation to promote calm alertness (Cole & Tufano, 2008). As a result, my goal will be to increase quality of life by increasing the frequency of positive experiences (Cole & Tufano, 2008; Wood et al., 2017). Project Design and Implementation This project fills a gap in the needs of the activities director to provide individualized, meaningful, engaging, and appropriate activities for the residents with dementia. Residents with dementia can exhibit symptoms of anxiety, depression, or agitation, and engagement with activities can help alleviate these negative symptoms (Baker et al., 2001; Silva, 2018). I designed and implemented this project to assist staff in choosing appropriate and individualized activities, and to train staff on using a sensory-based approach when interacting with residents with SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 10 dementia. To maintain organization, I used a weekly timeline (see Appendix A). To determine the baseline status of residents with dementia, I chose the Functional Behavior Profile (FBP) to understand how residents engage in their occupations. Baum et al. (1993) developed this assessment, which was to be completed by caregivers of people with dementia, to determine a persons behaviors relating to task performance, solving problems, and interacting socially. This assessment has 3 categories which can be used as a total score or as individual scales: performance of tasks, socialization, and problem solving (Baum et al., 1993). Because my project focuses on symptoms of anxiety, agitation, and apathy, among other symptoms, I chose to focus on the performance of tasks and socialization scales. I administered this questionnaire to spouses and staff who are regular caregivers of the residents with dementia. Resident Daily Preferences After gathering information about the residents with dementia, staff, and the day-to-day operations of the facility, I began implementing the program. To address individualized care, I chose to create a questionnaire which could be completed by staff, family members, or the resident. At the request of my site mentor, I created an all-encompassing questionnaire to gather information about each resident, not simply those with dementia. First, I determined what the site currently uses to gather information about residents daily preferences. I identified gaps in the current system using the Preferences for Everyday Living (PELI) and the Occupational Therapy Practice Framework (OTPF) (AOTA, 2020). In the questionnaire, I included a section on how the residents prefer to deal with stress. I based those questions on the Sensory Processing Caregiver Checklist (SPCC) (Champagne, 2018). I also spoke to residents with dementia about their leisure and self-care preferences. After my first draft of the questionnaire, I requested feedback from social services, the activities director, and my site mentor. SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 11 Sensory-based Activities I provided appropriate, sensory-based activities for the residents with dementia at Four Seasons. First, I needed to inventory what the site currently had. I spoke to the activities director about the activities she uses for people with dementia. I organized and cleaned out the various locations where the activities director keeps supplies for activities. Using Champagnes (2018) book as a guide, I determined gaps in appropriate activities for people with dementia, for both current residents, and as those residents might progress in their condition. Sensory-based Approach Training Manual To ensure sustainability of the sensory-based activities I created, I chose to compile a manual which would provide information about the activities. I gave context to the activities by providing education on the sensory systems and how dementia affects sensory processing. At the request of my site mentor, I included a section on environment and approach using a sensory-based perspective. I observed staff interactions with residents with dementia to determine areas for improvement to increase quality of life. I also spoke to residents with dementia about their experiences with sensory changes. I researched the literature on providing a safe and comfortable environment and how to approach people with dementia. Throughout the manual, I strove for readability because different positions at the site require various levels of education. In the manual, I included information about the sensory-based activities I implemented, and information about how and when to use the activities. At the end of the DCE, I conducted 2 in-service sessions to train current staff members on the sensory-based approach and activities. During these 2 sessions, I administered a 3-question pre- and post-quiz to determine how effective my presentation was, and asked for feedback through a Likert scale and short-answer survey. SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 12 By using three components, I ensured the project would sustain after I leave by educating staff on the importance of individualization in choosing sensory-based activities, and the importance of using a sensory-based approach when working with people with dementia. Project Outcomes To decrease neuropsychiatric symptoms in people with dementia at Four Seasons, I created for my DCE project three components to provide the site a sensory-based program for caring for people with dementia. I created the means to determine the residents daily preferences, which includes a sensory preferences element. Using existing and purchased items, I created sensory-based activities for the residents with dementia. Finally, I created a manual to train staff on using a sensory-based approach when working with people with dementia. Before creating this binder, I needed to understand the population of current residents with dementia. I used the Functional Behavior Profile (FBP) to understand their task performance and social interactions (Baum et al., 1993; Shirley Ryan Ability Lab, n.d.). I talked to certified nursing assistants (CNA), spouses, the activities director, and used my own observations to complete the assessments. These assessments were especially valuable to promote discussion about behaviors and other observations from staff and caregivers (Baum & Edwards, 2000). I inquired about 6 residents with dementia, including 4 women and 2 men. I focused on the task performance and the socialization domains of the FBP. For each domain, residents can score 44 points, and a higher score indicates higher performance and independence with daily tasks (Shirley Ryan Ability Lab, n.d.). Residents scores ranged from 16 to 43 out of 44 for task performance, and 23 to 37 out of 44 for socialization. Staff and spouses reported behaviors and habits of residents such as: She is up a lot at night and sleeps during the day, he prefers late morning activities, and she SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 13 seems to prefer physical activities, such as exercise group, rather than cognitive activities, such as Bingo or Yahtzee. These scores indicate a wide variety of abilities with some residents requiring constant verbal and tactile cueing and other residents requiring supervision (Baum et a., 1993). Because of these wide ranges, the activities described in the activities binder will need to be applicable for many different kinds of people. To understand the sensory preferences and needs of the residents, I used observation and the SPCC (Champagne, 2018) to determine their needs during structured group activities and during independent activities. I frequently noticed an increased need in the late afternoons to early evenings, when some residents became more agitated, anxious, and disoriented. This increased agitation during this time of day is frequently referred to as sundowning (Forbes & Gresham, 2011). During these times, residents would display behaviors such as perseverating, pacing, and wayfinding. Resident Daily Preferences For Four Seasons Health Center, I created a comprehensive questionnaire to help staff learn more about the daily preferences of their residents (see Appendix B). The questions are mostly checkbox options with some opportunities for short answers. I based this questionnaire off the PELI, the SPCC, and the OTPF (AOTA, 2020; Champagne, 2018; Preference Based Living, 2020, October 2). With the OTPF in mind, I adjusted questions from the PELI and reframed them to focus on daily habits and routines. I used the SPCC to formulate questions to determine how a resident deals with stress. These questions ask the resident about their gustatory, auditory, visual, tactile, proprioceptive, and vestibular preferences. Examples of questions include When you are upset, stressed or overwhelmed, how do you make yourself feel better? Eat or drink something? Receive a hug? Watch TV? Hold a special object? SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 14 I asked for feedback from staff and my site mentor after my first draft of the questionnaire. For example, in the PELI, they give an option for smoking as an activity someone might like to do outside. My facility, however, is a smoke-free campus. Other staff members recommended small additions to options in self-care tasks and leisure activities, such as including social media. After making adjustments, my questionnaire was six pages long. Because of high family involvement at this facility, my site mentor believed that family will gladly fill this assessment out. However, some residents come to Four Seasons for short-term skilled nursing, or do not have frequent contact with loved ones who might live out of state. In this case, my site mentor asked that I create an abbreviated version of the questionnaire that can be completed by the resident or by a facility representative. This abbreviated questionnaire was one page long with more opportunities for short-answers rather than all checkbox options. Sensory-based Activities During my time exploring the available activities at Four Seasons, I inventoried and organized the activities closet and cabinets. I found the department already had many items which could be used in sensory-based activities for residents with dementia. For example, there were already several sensory fidget quilts. These quilts provide tactile, visual, and sometimes auditory sensory input for people with dementia (Champagne, 2018). However, I found these quilts to be poorly constructed and I did not think they would survive a cycle through the washing machine. I deconstructed the quilts and recreated a quilt using the components. This quilt could be washed and used many times. I included visual, tactile, and auditory sensory inputs (see Appendix C). From other items in the closet and items bought at a store, I created sensory rummage kits based on ideas from Champagne (2018) and on the leisure preferences from current residents.. I SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 15 also found many sewing supplies in the closet, including buttons, spools of thread, and other notions typically used when sewing. From my interactions with the residents with dementia, I knew that at least two enjoyed sewing as a leisure activity. I compiled these items into a container, and included squares of fabric of various tactile sensations. Other rummage kits included a fishing kit, household maintenance kit, office worker kit, and a jewelry kit. For the fishing kit, I included lures among the items, but removed the barbed hooks for safety. Other activities I compiled include folding laundry, sorting activities, and a dart-throwing game which uses hook and loop balls on a fabric board. To ensure sensory-based activities were appropriate and applicable to the residents with dementia at Four Seasons Health Center, I implemented some activities during different times of the day. Sometimes, residents were already calm and alert, and other times, residents were agitated and anxious. During one instance of particular agitation, a resident demonstrated increased respiration rate and frequent vocalizations. When spoken to, she would frequently reply with what? indicating decreased auditory processing (Champagne, 2018). Using the SPCC, I determined it would be beneficial to focus on visual and tactile sensory input rather than auditory input (e.g. conversation). After about 30 minutes, the resident was calmer with a normalized breathing rate, and had fewer vocalizations. In another instance, a resident was worried about her spouse who was recovering from a health incident. Due to her dementia and stress, she repetitively asked about her spouse every two to three minutes. She reported she did not want to rest because she was too worried about her spouse. I brought a basket of laundry to fold, and asked her if she would help me fold it. She agreed, and while we folded laundry, I asked her questions about her past to distract her from her worries (Fraker et al., 2014). Shortly after I left her, a CNA reported that the resident was more SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 16 agreeable to resting before dinner. My attempts at implementing sensory-based activities was trial-and-error at times, however, and did not always help ease a residents agitation. One resident was anxious before lunch one day, and had difficulty becoming calm. I knew she liked to sew, so I showed her the sewing rummage kit I created. Despite encouragement and questions to prompt conversation about sewing, her ability to attend to the activity was approximately 15 to 30 seconds before she would begin repeating I dont know what Im supposed to do. I switched to reading her the newspaper and discussing with her the headlines. This form of sensory stimulation seemed to be more engaging for the resident, and we continued this activity until lunch. Sensory-based Approach Training Manual To accompany the sensory-based activities, I created a training manual entitled Caring for People with Dementia: a Sensory-based Approach (see Appendix D). Throughout the manual, I included evidence-based research to justify information provided. It included information about the types of dementia, the signs and symptoms of dementia, and how dementia affects sensory processing. I included information on how a person with dementia interprets their environment, and how to approach a person with dementia. Other sections of the manual include sensory overload, calming strategies, and sensory deprivation. I also included information about the sensory-based activities and when to use them. For example, I suggested staff try the activities during times when the person with dementia is agitated and anxious, such as during sundowning. I ended the manual with suggestions for specific sensory-based activities. I included information about the activity kits and other sensory-based activities to try. For example, I suggested that some residents may appreciate going for a walk, listening to music, or going SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 17 outside (Champagne, 2018; Ridder et al., 2013). I also included a section of activities which may be more appropriate for residents further along in their progression of dementia. These sensory-based activities include the fidget quilt, a glitter lava lamp, scented lotions for hand massage, and more. These activities require less participation and cognition as appropriate for these residents (Moghaddasifar et al., 2018). In-service Presentation I presented this manual as two in-service sessions for staff. A total of 7 staff members attended the sessions, and all completed a pre- and post-quiz to gauge how well staff already knew the sensory-based techniques, and how well I educated them in these techniques. Audience members included a certified occupational therapy assistant, a speech language pathologist, the regional director of the facility, and higher-level staff such as the director of nursing and director of social services. No CNAs attended the sessions. For the quiz, 3 out of 7 staff members demonstrated improvement by answering 2 answers correctly on the pre-quiz, and 3 answers correctly on the post-quiz. One person made no improvement on the post-quiz, and 3 people answered all questions correctly before and after the presentation. Because almost half of the staff members demonstrated increased knowledge in using a sensory-based approach when working with people with dementia, I am confident the binder will educate future employees in providing excellent care and improving the quality of life for the residents with dementia. However, my data is limited because I did not get a variety of education levels from other staff members such as CNAs. After the presentation, I asked for feedback in the form of a Likert scale survey and a short-answer to elicit other feedback. All participants rated the presentation highly in terms of usefulness, understandability, whether objectives were met, and whether they were likely to use a SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 18 sensory-based approach in the future. Audience members wrote simple and well-organized, and great presentation. Summary At Four Seasons, there are many residents with dementia among a population of approximately 55 residents of varying cognition levels. As the sole staff member of the activities department, the activities director must manage the leisure activities for all residents. Oftentimes while she is leading games, she is interrupted by someone with dementia who is wayfinding, agitated, or anxious. She tries to find a way to get the person with dementia to participate, but this attempt often takes her attention away from the other residents playing the game. Sometimes residents experience bouts of agitation and require considerable effort from staff to reduce these moods. Because it can be difficult to understand how older adults with dementia experience the world, I created a manual to educate staff on using a sensory-based approach when working with residents with dementia. In this manual, I included information about approach, environment, and sensory-based activities which may help with alleviating sensory overload and sensory deprivation. I also created sensory-based activities, including themed rummage kits, which staff can easily obtain from the activities closet. They will use choose kits relating to the residents leisure preferences, prior career, and reported stress-reducing strategies which would be detailed on the intake questionnaire I also created for the site. I presented this manual to staff during two in-service presentations. A total of 7 staff members attended, and all completed pre- and post- presentation quizzes, and a feedback survey. 3 of the 7 attendees demonstrated improvement on the quiz, 3 answered all answers correctly on both quizzes, and one person showed no improvement. With feedback and the quiz results, I am SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 19 confident that this manual will be beneficial to new staff who may not have worked with people with dementia. With this sensory-based approach to determining the daily preferences, to interacting, and to providing sensory-based activities, residents with dementia can live a more fulfilled and higher quality life. Conclusion Throughout my time working on this project, I have learned on a day-to-day basis how much effort it takes to care for people with dementia. As described by many researchers, many of the residents with dementia demonstrated agitation, aggression, anxiety, and depression (Alzheimers Association, 2022; Silva et al., 2018; Strm et al., 2016). Although the products of this project will not fix all the negative neuropsychiatric behaviors of residents with dementia, the staff will be able to use the techniques and supplies I have provided to ameliorate these symptoms. There is still more work to be done for the site to better the quality of life for the residents with dementia. In the future, an occupational therapy practitioner could work with residents and staff to develop an individualized sensory-based activity plan to mitigate sensory deprivation, sensory overload, and behaviors relating to agitation, anxiety, depression, and other symptoms (Champagne, 2018). An occupational therapy practitioner could also increase participation in leisure activities and ADLs by addressing the sensory-based aversions that some older adults with dementia can develop (Champagne, 2018; Houston & Christie, 2018). In the meantime, the products I have made for the residents with dementia at Four Seasons Health Center will contribute to their quality of life. SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 20 References Alzheimers Association. (2022). 2022 Alzheimers disease facts and figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 1-87. https://doi.org/10.5014/ajot.2020.74S2001 Baker, R., Bell, S., Baker, E., Gibson, S., Holloway, J., Pearce, R., Dowling, Z., Thomas, P., Assey, J., & Wareing, L. A. (2001). 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A systematic review of the effects of occupational therapy for persons with dementia: a meta-analysis of randomized controlled trials. Neurorehabilitation, 31(2), 10715. https://doi.org/10.3233/NRE-2012-0779 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 22 Lopis, D., Le Pape, T., Manetta, C., & Conty, L. (2021). Sensory cueing of autobiographical memories in normal aging and Alzheimer's disease: a comparison between visual, auditory, and olfactory information. Journal of Alzheimer's Disease: Jad, 80(3), 11691183. https://doi.org/10.3233/JAD-200841 Maseda, A., Cibeira, N., Lorenzo-Lopez, L., Gonzalez-Abraldes I., Bujan A., de Labra, C., & Millan-Calenti J. C. (2018). Multisensory stimulation and individualized music sessions on older adults with severe dementia: Effects on mood, behavior, and biomedical parameters. Journal of Alzheimer's Disease, 63(4), 14151425. https://doi.org/10.3233/JAD-180109 Moghaddasifar, I., Fereidooni-Moghadam, M., Fakharzadeh, L., & Haghighi-Zadeh, M. H. (2019). Investigating the effect of multisensory stimulation on depression and anxiety of the elderly nursing home residents: A randomized controlled trial. Perspectives in Psychiatric Care, 55(1), 4247. https://doi.org/10.1111/ppc.12285 Padilla, R. (2011). Effectiveness of environment-based interventions for people with Alzheimers disease and related dementias. American Journal of Occupational Therapy, 65(5), 514-522. Preference Based Living. (2020, October 2). What is the Preferences for Everyday Living Inventory (PELI)? https://www.preferencebasedliving.com/tip-sheets/what-is-the-preferences-for-everyday-l iving-inventory/ Ridder, H. M., Tige, B., Qvale, L. G., & Gold, C. (2013). Individual music therapy for agitation in dementia: An exploratory randomized controlled trial. Aging and Mental Health, 17(7), 667-678. http://dx.doi.org/10.1080/13607863.2013.790926 Shirley Riley Ability Lab. (n.d.). Functional Behavior Profile. Rehabilitation Measures SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 23 Database. https://www.sralab.org/rehabilitation-measures/functional-behavior-profile Snchez, A., Marante-Moar, M. P., Sarabia, C., de Labra, C., Lorenzo, T., Maseda, A., & Milln-Calenti, J. C. (2016). Multisensory stimulation as an intervention strategy for elderly patients with severe dementia: A pilot randomized controlled trial. American Journal of Alzheimers Disease and Other Dementias, 31(4), 341350. https://doi.org/10.1177/1533317515618801 Silva, R., Abrunheiro, S., Cardoso, D., Costa, P., Couto, F., Agrenha, C., & Apstolo, J. (2018). Effectiveness of multisensory stimulation in managing neuropsychiatric symptoms in older adults with major neurocognitive disorder: a systematic review. JBI Database of Systematic Reviews and Implementation Reports, 16(8), 16631708. https://doi.org/10.11124/JBISRIR-2017-003483 Sposito, G., Barbosa, A., Figueiredo, D., Yassuda, M. S., & Marques, A. (2017). Effects of multisensory and motor stimulation on the behavior of people with dementia. Dementia: The International Journal of Social Research and Practice, 16(3), 344359. https://doi.org/10.1177/1471301215592080 Strm, B. S., Ytrehus, S., & Grov, E. (2016). Sensory stimulation for persons with dementia: A review of the literature. Journal of Clinical Nursing, 25(1314), 18051834. https://doi.org/10.1111/jocn.13169 Wood, W., Lampe, J. L., Logan, C. A., Metcalfe, A. R., & Hoesly, B. E. (2017). The Lived Environment Life Quality Model for institutionalized people with dementia. Canadian Journal of Occupational Therapy, 84, 22-33. World Health Organization. (2020, September 21). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 24 Appendix A Weekly Planning Guide Week DCE Stage Weekly Goal (orientation, screening/evalu ation, implementation, discontinuation, dissemination) 1 Orientation Complete orientation by end of week Objectives Meet with site mentor Monday Tasks Obtain necessary log-ins for documentation, resident information Check in with site mentor Wednesday Adjust MOU to new setting (which does not contain a designated memory care unit) 2 Orientation Identify patients with dementia who might benefit from sensory-based interventions Identify patients with dementia who might benefit from sensory-based interventions 1/10/22 1/12/22 Meet with activities director to identify possible patients with dementia 1/12/22 Meet with COTA to identify possible patients with dementia Attend activity to observe patients (Bingo) Meet with site mentor Tuesday Establish means to document Date complete Meet with new therapy manager (starts this position Monday) on Thursday Meet with activities director to continue to identify needs of residents 1/18/22 1/17/22 1/18/22 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 25 Screening / Evaluation Develop sensory profiles for residents with dementia 3 Screening / Evaluation 3 Screening / Evaluation Develop sensory profiles for residents with dementia Develop sensory profiles for residents with dementia Inventory supplies Screening / Evaluation Prepare questionnaire to identify individualized interventions for residents Adjust sensory preferences checklist Confer with activities director to develop questionnaire appropriate to administer to residents Administer questionnaire Administer FBP and adjusted sensory preferences checklist to 2 residents and their spouses 1/24/22 Cabinets 1/28/22 meet with site mentor 4 Screening / Evaluation Screening / Evaluation Inventory supplies Adjust MOU goals Sensory profile 5 6 Implementation Implementation Review MOU goals Develop sensory profiles for residents with dementia Develop profiles for residents with dementia Sensory-based activities 1/21/22 Closet confer with site mentor about goals 1/26/22 2/4/22 2/4/22 meet with site mentor 2/2/22 2/4/22 meet with faculty mentor update 2/11/22 2/11/22 continue to adjust sensory profile questionnaire continue observing residents during planning, group activities and individual activities; build rapport administer FBPs speak to CNAs during and adjusted lunch sensory profiles for 4 residents continue organizing supplies 2/11/22 2/11/22 2/18/22 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 26 identify gaps in sensory-based activities develop list of items to purchase 7 Implementation Develop profiles for residents get to know residents during activities 2/18/22 meet with site mentor lead exercise class and trivia 2/15/22 2/21/22 meet with site mentor 2/21/22 2/21/22 refer to Preferences for Everyday Living Inventory, per site mentor 2/25/22 Update goals: daily preferences questionnaire (include sensory preferences, nix sensory-based profiles) begin work on intake questionnaire for site 8 Implementation Resident profiles Sensory based activities binder 9 Implementation Intake questionnaire Intake questionnaire 10 Implementation Intake questionnaire begin work on binder of sensory-based activities Create sensory-based activities organize FBPs, prepare 3/3/22 for outcomes section of scholarly report meet with site mentor 3/4/22 use inventory of sites 3/4/22 activities closets / cabinets using components from existing fidget quilts, create better quality fidget quilt give site mentor draft of intake questionnaire, get feedback give activities director and social services intake questionnaire for feedback get feedback back from social services 3/5/22 3/10/22 3/11/22 3/14/22 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 27 Intake questionnaire 11 Implementation Sensory-based intervention binder Intake questionnaire submit draft to site mentor feedback: include environment & approach to sensory-based approach to working with people with dementia obtain letterhead for questionnaire from site mentor Sensory-based activities 12 13 Implementation Implementation / discontinuation Prepare to disseminate to facility Sensory-based approach binder Intake questionnaire implement feedback on questionnaires; adjust formatting create abbreviated intake questionnaire get feedback Talk to director of nursing to schedule in-service draft pre- and post-quiz for in-services draft survey to get feedback from staff after inservice scan letterhead 3/18/22 3/18/22 3/22/22 3/23/22 3/22/22 Go to Walmart with activities director to purchase supplies put together kits (elicit help from residents with dementia) remove barbs from fishing lures schedule for tuesday of week 14, 2 sessions, at shift changes; per site mentor 3/24/22 3/24/22 3/25/22 3/30/22 4/1/22 4/1/22 photograph sensory-based activities to include in binder finish formatting, include directions for completing questionnaire, present 3/31/22 4/6/22 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 28 Intake questionnaire In-service In-service 14 Dissemination In-service Sensory-based approach binder ensure binder prints as desired print binder In-service In-service In-service In-service final draft of full and abbreviated forms to site mentor, receive last feedback per site mentor, email copy of both questionnaires to director of social services; Goal considered met Per site mentor, reschedule in-service for Thursday of week 14 scope out presentation room to ensure technology, etc, works in prep for in-service finish presentation test print binder purchase last supplies for binder put final touches Goal met for on binder sensory-based approach binder obtain necessary technology in prep for presentation practice practice presentation to ensure conciseness, brevity pre- and print post-quiz, feedback survey Present 7AM and 2:15PM Review quizzes & feedback for outcomes 4/6/22 4/6/22 4/7/22 4/8/22 4/11/22 4/12/22 4/13/22 4/12/22 4/13/22 4/13/22 4/14/22 4/15/22 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 29 Appendix B Daily Preferences Questionnaire Sample SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 30 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 31 Appendix C Pictures of Sensory-based Activities SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 32 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 33 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 34 SENSORY-BASED PROGRAM FOR OLDER ADULTS WITH DEMENTIA 35 Appendix D Sample Pages of Sensory-based Approach Training Manual  ...

... 1 Improving Quality of Life Within a Hospice Setting Through Participation in Meaningful Occupations Abigail L Gettinger May, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Brenda Howard DHSc, OTR, FAOTA 2 A Capstone Project Entitled Improving Inclusion and Quality of Life Within a Hospice Setting Through Participation in Meaningful Occupations Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Abigail Gettinger Student of Occupational Therapy Approved by: _______________________________ Faculty Capstone Advisor ___________________ Date _______________________________ ___________________ Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: _______________________________ ___________________ Chair, School of Occupational Therapy Date 3 Abstract The Abbie Hunt Bryce Home (AHBH) is a non-for profit organization that works to provide low-income or homeless individuals within the Indianapolis area a home in which they can receive hospice services while also living out their final days with dignity and respect. (Morning Light, 2020). Recent investigation into the home revealed that the home has a much higher African American population when compared to the national average. This, in turn, launched an investigation into the home's current hospice program in order to identify its strengths, weaknesses, and areas for improvement. This project used observational data to assess the home's current policies, procedures, practices, and care. This data showed that the homes staff lacked materials, resources, and knowledge in terms of maintaining quality of life (QOL) and promoting a good death among their patients and family members. Materials such as adaptive equipment, items making up leisure, self-care, and social occupation, and items that help promote an engaging environment were implemented within the home along with education and further resources that promote understanding of and promotion of QOL within the home. An outcome measure assessing the staffs understanding, confidence, satisfaction, and usability of the resources and materials presented to them was administered after completion of implementation. Results of the survey showed good ratings from staff overall and also showed the need for further education and implementation of QOL interventions within the home. These results also show the usefulness and need of occupational therapy within this healthcare setting promote maintained QOL and a good death among patients and family members. Introduction 4 The Abbie Hunt Bryce Home (AHBH) first opened its doors in 2004 after a few Indianapolis citizens recognized a need to create a place for the dying poor to go. Since its start in 2004, The AHBH has served close to 500 residents with a goal of providing its residents a home in which they can live out their last chapter of life in peace and tranquility. (Morning Light, 2020). All services and care are provided free of cost to all qualifying individuals, working to improve quality of life (QOL) among everyone served. (Morning Light, 2020). Recently the AHBH has noticed a trend among the individuals it serves. T. Fodor (former CEO) reported that the current inclusion rate of African American residents is about 33%. (personal communication, March 5, 2021). This rate greatly surpasses the reported national percentage (8.2%) of African Americans who receive hospice care in 2018. (National Hospice and Palliative Care Organization, 2020). This number further shows the significant role the home plays when providing hospice care to the community while also showing their passion and commitment to improving hospice care for all. In order to continue improving hospice care for all who enter through their door, the AHBH must first understand its weaknesses and identify ways in which it can improve and better the delivery of care. Initially this project aimed to understand the homes strengths and weaknesses when it comes to delivery of care to differing patient populations such as the African American population. During the initial weeks of this experience the home and its residents were observed to lack engagement within meaningful occupations, including social participation, with leading to a decrease in perceived QOL. After further discussion it was decided that the goal and aim of this project should change. The new aims of this project is to implement knowledge, materials, and resources into the home in order to promote engagement in meaningful occupations, increase QOL, and increase the knowledge and understanding of staff members. 5 Background The initial needs assessment of this DCE project determined that the focus of this project should be on identifying strengths and weaknesses of the AHBHs hospice program when it comes to delivery of care to patients within a minority groups since the home was experiencing an increased amount of African American patient. However, during the initial weeks of this project it was determined that the home had bigger needs due to an observed lack of occupational and social engagement along with an observed lack of knowledge among staff members. This, in turn, resulted in a decrease in perceived QOL among residents. With this in mind, this project changed its focus to understanding the current barriers to hospice care among all patient groups while also implementing education, materials, equipment, and resources that will improve engagement in meaningful occupations and perceived QOL. Hospice care is a special kind of care that provided symptom relief but also focuses on the QOL and compassion so that the patient may live as fully and as comfortably as they like. (American Cancer Society, 2019). If this is the case, then why are so many individuals, especially those within a minority group, not taking advantage of these specialized services? In order to improve we must first understand the weaknesses and barriers to hospice care. Many previous studies have found cultural beliefs and lack of knowledge surrounding African American culture to be one of the many factors influencing hospice use within this population. (Dillon & Basu, 2016; Mazanec et al., 2010; Rosenfield et al., 2007; Washington et al., 2008). These studies also state that religious beliefs, lack of education, and traditional African American values can influence use, understanding, and view of hospice services within this patient population. (Dillon & Basu, 2016; Mazanec et al., 2010; Rosenfield et al., 2007; Washington et al., 2008). These beliefs often circle back to the unique family structure within African American 6 culture and the need to make decisions, about care options, as a family. (Dillon & Basu, 2016; Mazanec et al., 2010). Furthermore, lack of knowledge among healthcare workers about some of the factors listed above can often lead to biases, cultural mistrust, and lack of hospice utilization among this population. (Mazanec et al., 2010). In order to improve care we must first understand the barriers to care. Even though these studies focus mainly on one minority group, it is important for hospice staff and healthcare workers to understand that not every patient is the same and has the same experience. The staff at the AHBH need to be able to recognize and understand the different factors that influence a patients experience in order to improve the care and services given to the residents. Interestingly, many of the same barriers are also present and reported across many other patient populations. Recent studies have shown the need for healthcare workers to understand a patient's spiritual, cultural, and religious beliefs in order to foster a personal and inclusive environment for the patients they serve. (Hall et al., 2013; Mahilall & Swartz, 2021). These studies show that having a basic knowledge of different beliefs and how they might impact patient care choices can help healthcare workers engage and support their patients throughout this difficult time in their lives. (Hall et al., 2013; Mahilall & Swartz, 2021). Interestingly a study conducted by Candrian et al. (2017) found that understanding the multiple context and influences within a hospice patients life to be a helpful tool for healthcare workers when it comes to decision making and developing care goals. However, a study conducted by Levy et al. (2021) found medical students to be unsuccessful when perceiving a patients hospice care goals especially within psychosocial and spiritual domains. As previously mentioned, these studies continue to show a lack of understanding and knowledge among healthcare workers which creates further barriers to all hospice patients regardless of whether or not these patients fall into 7 a minority group. It is also interesting to note that many of the barriers identified within these studies are also factors that make up and influence an individual's perceived QOL. According to the World Health Organization (1998) QOL can be defined as an individuals perspective of their position in life in the context of the culture and value system in which they live... (p. 11). Historically QOL has been very broad and has taken on many definitions as it has evolved over many years. (Scaffa et al., 2010, p. 122). However, one thing can be assumed when looking at QOL and that is the fact that engagement in occupations can influence and improve an individual's QOL. (Scaffa et al., 2010, p. 124). In fact many studies have stated that the role of occupational therapy within a hospice setting is to promote a patients QOL through engagement in occupations and through the use of holistic and client-centered care. (American Journal of Occupational Therapy, 2016; The American Occupational Therapy Association, 2015; Pizzi, 2015). These study and others call for the need of occupational therapists within the hospice setting in order to help establish a good death where the patient and family members QOL is maximized through improved care and engagement in meaningful occupations. (Scaffa et al., 2010, p. 494). Even though occupational therapy may be a needed profession within a hospice setting, it is often excluded from care causing lacks in care and ricking a decrease in both a patients occupational engagement and QOL. A recent study conducted by McCaa et al. (2021) stated that the many concerns voiced by family members of a hospice patient align with many of the domains within the Occupational Therapy Practice Framework (OTPF) such as promoting and supporting occupations of the patient, understanding client factors and how adaptive equipment may promote occupational participation, and supporting the patients environment to promote continued participation within occupations. These researchers show a need for occupational therapy within the hospice setting. According to these studies, the inclusion of an 8 occupational therapist within a hospice setting can help address some of the previous reported barriers within hospice care by promoting and maintaining a patients QOL through occupational engagement. These studies also point out how occupational therapists also work as an advocate for hospice patients therefore helping hospice staff further understand barriers to care and how they can be improved. All of the studies mentioned above are not without flaws. Many of them present with limitations such as small sample sizes, a lack of generalizability, and possible research bias which influences their identified findings and reliability as it relates to the current project. These limitations also call upon the current study in terms of identifying, understanding, and promoting improvements in care for the current and future residents of the AHBH. Limitations within the studies pertaining to the use of occupational therapists within the hospice setting also call upon the current study show the continued need and use of occupational therapy services within hospice settings such as the AHBH. Theory or Frame of Reference Used for This Project The Kawa model by Lim & Iwama (2011) views the person as a river that begins flowing at birth and continues to flow until it reaches a larger body of water or the end of life. This model also introduces rocks, also known as barriers, and driftwood, or attributes within a persons life, that work to slow the flow of a persons river. (Lim & Iwama, 2011). In order to keep a continuous flow throughout a persons entire life these barriers and attributes must be identified, removed, or used as an advantage by the person. The kawa river model states that it is important for a person to have a good and strong flow throughout their entire life; slowing down the flow of someones river could lead to devastating results within a persons life and decrease their 9 perceived QOL. (Lim & Iwama, 2011). This model can be easily applied to hospice care because it reduces possible barriers from the beginning of life to the end of life. Identifying barriers and attributes within the facility can help to strengthen a patients river and improve the care they receive and the QOL they experience during their final days. Similarly, Lasletts third age theory looks at each stage of an individuals life and identifies common features and characteristics that should be observed within each age. (Cole & Tufano, 2008, p. 217). This theory covers each stage of life within its four stages, starting from an infant and toddler and ending at old age and death. (Cole & Tufano, 2008, p. 217). Even though each patient within this facility could be grouped within the same stage, it is still appropriate to use this theory to examine whether or not specific characteristics within this age are present and to understand how previous ages have affected their current state or situation. Understanding the specific characteristics that should be present within this stage of life and how past stages have affected them can help to understand which factors have contributed to the residents current QOL in and how these factors can be maintained, changed, or improved in order to ensure increased or maintained QOL during the final stages of life. Using the two theories listed above and understanding the current and past evidence surrounding hospice care can help shape the experiences within this capstone project and work to understand specific attributes or barriers within the AHBH and the delivery of care to all patients within this home. These theories can then be used to better the care given and the QOL of all patients within the AHBH both now and in the future. Project Design and Implementation Project Design 10 The information gathered from past studies call for a project that works to increase QOL for both patients and family members while also taking the time to educate hospice staff on the ways in which they can help improve QOL among hospice patients. This project was formed to not only improve QOL through occupational engagement, advocacy, and occupational justice but to also provide education and resources to the hospice staff that help them continue to improve QOL and quality of care for their patients. In order to do this, this project first used observational data to analyze the home's current resources, materials, policies, and procedures in terms of promoting QOL among its patients while also taking into account the staffs current knowledge of QOL and how it can be improve during their stay at this facility. Finally this project used both a quantitative and qualitative survey to assess outcomes of the implementation process such as satisfaction, understanding, confidence, and usability of the materials, resources, and equipment provided to staff. It should be noted that this project initially used a staffing survey to gauge the staffs knowledge and experience with specific factors related to inclusion of specific patient populations within the home. After further analysis of the survey, it was determined that observational data would be of better use when determining the facilities strengths and weaknesses causing a lack of use of the initial staffing survey. Project Implementation The implementation process first began through organizing and assessing the homes current equipment, resources, and materials. Time was also taken to observe the residents current occupational engagement and the staffs daily interactions with the patients. During this process this researcher found much of the homes adaptive equipment and materials had been thrown out with the staff reporting decreased need and use among the current patient population at the home. This, in turn, pushed the implementation process back as this researcher began fundraising in 11 order to provide the home with necessary equipment and materials. Once funds were raised, materials that aid in participation of ADLs, IADLs, leisure occupations, and social occupations were purchased along with adaptive equipment that aids in completion of and participation in occupations. An intake form was also made at this time and included questions for the staff to ask in order to gauge the patients meaningful occupations and what they would like to continue to participate in during their time at the AHBH. Once all materials and resources were organized within the home, the staff were given education on QOL, its importance within this setting, and how to use the new materials, resources, and equipment provided. After education was given and questions were answered the staff was given the outcome survey to complete in order to gauge understanding, satisfaction, usability, confidence, and feedback. Challenges of this implementation process include a lack of accountability among the staff and the ongoing policy and procedural changes happening within the facility. During this time the home experienced a leadership change along with a review of current policies and procedures leading to set backs within the project itself and confusion among the staff throughout the process. Fundraising also provided a challenge and a set back to the project but was also considered a success when a sufficient amount of funds were raised and materials could then be purchases and introduced within the home and to the staff. Project Outcomes A total of 5 staff members completed the outcome survey after all materials, resources, equipment, and education were presented. The staff rated their level of understanding, confidence, satisfactions, and usability on a 5 point Likert scale. Overall take away and feedback were assessed using qualitative questions in which staff were given space on the survey to write 12 out their responses to the questions provided. This researcher used Excel to examine the mean rating of the staffs understanding, confidence, satisfaction, and usability among staff members. Qualitative questions were analyzed in order to find themes within the limited responses and to truly understand how the staff feels about the materials, resources, equipment, and knowledge provided to them. As mentioned above, the survey used a 5 point Likert scale in which 1 is the lowest rating and 5 is the highest rating. Results showed that the mean understanding was 4.8, confidence was 4.8, and satisfaction was 5 on a 5 point scale. Staff also reported how often they would use the materials, resources, equipment, and knowledge presented to them with a mean of 4.25 out of a 5 point scale. Interestingly, staff also reported how often they thought the patients at the home would use the materials, resources, equipment, and knowledge with a mean of 4 out of a 5 point scale. Qualitative aspects of the survey did not seem to follow one major theme or another but much of the information provided proved to be helpful in understanding the staffs thoughts and feelings about the materials, resources, equipment, and knowledge presented to them. Many of them simply stated the purpose of these materials, resources, equipment, and knowledge within the home. One staff member stated that These materials are great for the residents. It is a great way for them to feel some joy. While another staff member stated These boxes (materials, resources, equipment, and knowledge meet every aspect of life. Two of the staff members did report something they learned from the materials, resources, equipment, and knowledge presented to them. One staff member reported that they learned the importance of being open to new ideas concerning hospice care. Interestingly another staff member stated that they didnt know how much the materials were needed until today. 13 Summary The aim of this project was to develop and implement materials, resources, equipment, and knowledge that would increase the QOL of residents who currently reside at the AHBH. This project also specifically provided the staff within the AHBH with general education on QOL within a hospice setting while also providing education on how new materials, resources, equipment, and knowledge within the home work to promote engagement within meaningful occupations. In order to gauge the staffs understanding, satisfaction, confidence, usability, and overall big takeaway from the education given to them a survey using both qualitative and quantitative measures was used as an outcome measure with results analyzed. Results of the survey revealed that staff had good satisfaction, confidence, usability, and understanding of the education presented to them. The qualitative aspect of the survey revealed some interesting results from the staff members. Much of the staff members described the purpose of the materials, resources, equipment, and education while also stating how helpful these materials are to the residents and staff of the AHBH. Interestingly, one of the staff members stated that they did not know that the materials and resources presented to them were needed within the home. All of these results combined continue to show a need for further education of staff while also showing a need for further implementation of materials, resources, equipment, and knowledge within the hospice setting that work to maintain and promote the residents perceived QOL through engagement in meaningful occupations. This project and its results show the need for and implementation of occupational therapy within the hospice setting as a way of enhancing care, advocacy, occupational engagement, and inclusion for all individuals present within this setting. 14 Conclusion Both the student and the site learned and accomplished many things through the completion of this project. The AHBH received the opportunity to further examine their current policies, procedures, practices, and standards. In return the home found many areas in need of improvement and lack in accountability among many of the staff members. The home worked to improve these downfalls by including further leadership training, developing a new home liaison position, and providing further professional and personal education to staff. The student also found furthering educational opportunities through the completion of this project. This learning included further understanding of business and leadership roles, further understanding of fundraising and budgeting processes, and further understanding of the grant application process. The AHBH and the students accomplishments through the completion of this project included the implementation of materials, resources, equipment, and knowledge that aimed to increase QOL among the site's residents during their final stages of life. This accomplishment introduced many benefits into the delivery of care within the home and has worked to increase knowledge, advocacy, and occupational engagement within the site. This project also worked to further the understanding of occupational therapy and its unique role and use within the hospice setting. Occupational therapy proved to be a helpful partner to have within the hospice setting and worked to implement important interventions and knowledge that might be forgotten or abandoned within this care setting. Implications for future work and research include the inclusion of the patients perspectives, needs, and wants when developing interventions, materials, and resources within this and possibly other hospice settings. 15 References American Cancer Society. (2019, May 10). What is hospice care? American Cancer Society. https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospicecare.html American Journal of Occupational Therapy, (2016). Role of occupational therapy in end-of-life care. The American Journal of Occupational Therapy, 70(2), 7012410075p1 7012410075p16, https://doi.org/10.5014/ajot.2016.706S17 Candrian, C., Tate, C., Broadfoot, K., Tsantes, A., Matlock, D., & Kutner, J. (2017). Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses. Behavioral Sciences. Behavioral Sciences, 7(2), 1-12. https://doi.org/10.3390/bs7020022 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Dillon, P. J., & Basu, A. (2016). African Americans and Hospice Care: A Culture-Centered Exploration of Enrollment Disparities. Health Communication, 31(11), 13851394. https://doi.org/10.1080/10410236.2015.1072886 Hall, D., Shirey, M. A., & Waggoner, D. C. (2013). Improving Access and Satisfaction with Spiritual Care in the Hospice Setting. Omega: Journal of Death & Dying, 67(1/2), 97 107. https://doi.org/10.2190/OM.67.1-2.k 16 Levy, K., Grant, P., C., Kerr, C., W., Byrwa, D., J., & Depner, R., M. (2020). Hospice patient care goals and medical students perceptions: Evidence of a Generation Gap. American Journal of Hospice & Palliative Medicine, 38(2), 114-122. https://doi.org/10.1177/104990912093473 Lim, K.H. & Iwama, M.K. (2011). The Kawa (river) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (pp. 117-135). Edinburgh, Scotland: Elsevier Churchill Livingstone. Mahilall, R., & Swartz, L. (2021). Spiritual care practices in hospices in the Western cape, South Africa: the challenge of diversity. BMC Palliative Care, 20(1), 9. https://doi.org/10.1186/s12904-020-00704-z Mazanec, P. M., Daly, B. J., & Townsend, A. (2010). Hospice utilization and end-of-life care decision making of African Americans. The American Journal of Hospice & Palliative Care, 27(8), 560566. https://doi.org/10.1177/1049909110372087 Morning Light. (2020).Abbie hunt bryce home. Morning light life with care and dignity. https://www.morninglightinc.org/abbie-hunt-bryce-home/ McCaa, M. D., Gutman, S., Lorenz, K., Yefimova, M., Gray, C., Goebel, J., & Giamnitrapani, K. (2021). Identifying OT practice areas for improving end-of-life health care experience from narrative responses to bereaved family surveys. The American Journal of Occupational Therapy, 75(2). https://doi.org/10.5014/ajot.2021.75S2-PO236 17 National Hospice and Palliative Care Organization (2020). NHPCO facts and figures 2020 edition. National hospice and palliative care organization. https://www.nhpco.org/wpcontent/uploads/NHPCO-Facts-Figures-2020-edition.pdf Pizzi, M. A. (2015) Promoting health and well-being at the end of life through client-centered care. Scandinavian Journal of Occupational Therapy, 22(6), 442449. https://doi.org/10.3109/11038128.2015.1025834 Rosenfield, P., Dennis, J., Hanen, S., Henriquez, E., Schwartz, T. M., Correoso, L., Murtaugh, C. M., & Fleishman, A. (2007). Are there racial differences in attitudes towards care? A study of hospice-eligible patients at the visiting nurse service of new york. American Journal of Hospice & Palliative Medicine, 24(5), 408-416. https://doi.org/10.1177/1049909107302303 Scaffa, M., E., Reitz, M., S., & Pizzi, M., A. (2010. Occupational therapy in the promotion of health and wellness. F. A. Davis Company. The American Occupational Therapy Association. (2015). The role of occupational therapy in palliative and hospice care [PDF file]. Retrieved from https://www.aota.org/~/media/corporate/files/aboutot/professionals/whatisot/pa/facts/fact sheet_palliativecare.ashx#:~:text=Occupational%20therapy%20practitioners%20play%2 0an,barriers%20to%20performing%20these%20activities. Washington, K. T., Bickel-Swenson, D., & Stephens, N. (2008). Barriers to hospice use among african americans: A systematic review. Health & Social Work, 33(4), 267-274. https://doi.org/10.1093/hsw/33.4.267 18 World Health Organization. (1998). WHOQOL User Manual [Unpublished user manual]. 19 Appendix Doctoral Capstone Experience and Project Weekly Planning Guide Week DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) 1 Orientation Weekly Goal Objectives Tasks Date complete Complete orientation to site by the end of the week. Meet with site mentor and other important personnel throughout the first week to understand my roles and responsibilitie s throughout the upcoming weeks. Set up meetings with important personnel, exchange contact information when needed, review MOU and think of possible questions that might be asked. All tasks were complete d by 1/14/22 Understand environment, schedule, dress code, and conduct of the site. Discuss all important onboarding processes with mentor and sign all necessary paperwork Discuss MOU in more detail with site mentor and other important personnel. Finalize MOU and turn into Bright space. Understand my sites current mission and vision statements and what is Ask questions, think of talking points, think about any future projects, and how the site generally runs 20 2 Screening/Evaluation Determine an appropriate assessment method that aligns with DCE project and DCE site. expected of me. Identify previous methods used throughout this setting. Identify barriers to use of a specific assessment method. . 3 4 Screening/Evaluation Screening/Evaluation Hand out evaluation tool to staff by the end of the week. Understand the best distribution route for the tool and how to successfully distribute tools to appropriate participants. Observe home Make sure all for further relevant during a normal day. Take time to review specific articles methods sections. All tasks were complete d by 1/21/22 Take time to observe the daily practices of staff and patients to determine if assessment method is appropriate. Reach out to mentor and other important personal to discuss different assessment methods and if they are appropriate for this site. Speak with home director about distribution of the tool and begin making arrangements for distribution. Make sure tool is distributed through the agreed upon route. Make time to visit the home All tasks were complete d by 1/28/22 All tasks were 21 relevant and important information. 5 Screening/Evaluation 6 Data Analysis 7 Implementation observations and data is collected throughout the screening/eval uation stage. and observe staff throughout their typical day. Take time to also observe admission of a new patient, interactions between leadership and staff, and interactions between staff and patient. Stop data Ensure all Pick up all collection by relevant and surveys from the end of this important data staff who week. is collected participated. from all willing participants. Data analysis Determine Complete data of the strength, analysis of evaluation weaknesses, completed tool will be and areas of surveys. completed by improvement the end of this within the Meet with week. program. mentor and other important personnel to discuss findings and needed improvements within the current program. By the end of Discuss Meet with staff this week findings and and staff, student, need for administration and changes with and discuss administration all important findings from will meet to individuals. the evaluation further process and discuss brainstorm complete d by 2/4/22 All tasks were complete d by 2/11/22 All tasks were complete d by 2/18/22 All tasks were complete d by 2/25/22 22 changes to the program and what will be implemented in the near future. 8 Implementation 9 Implementation 10 Implementation Keep open communicatio n between everyone and ensure all voices are heard during the implementatio n process. ideas for changes. Ask questions to all staff to further understand the changes they want to see and the best way to implement them throughout the coming weeks. Final Determine Meet with staff decisions on implementatio and the changes n process, administration and what it will to discuss implementatio look like in finalized ns that will be the coming implementation made within weeks, and details. the program possible will be problems and Discuss completed by solutions to problems and the end of this this. solutions with week. staff and administration on finalized implementation process. All Ensure that all Create educational materials and resources and materials and resources are materials for resources will appropriate staff. be created by and the end of this understandabl Brainstorm week. e to the staff. possible locations to house these resources with the home director and staff. All further Determine Finalize funding materials and what sources for adaptive materials and materials and equipment equipment is equipment. All tasks were complete d by 3/4/22 All tasks were complete d by 3/11/22 All tasks were complete 23 11 Implementation will be purchased and organized within the home by the end of this week. needed in order to promote increased participation in meaningful occupations. By the end of this week an outcome measure will be created and distributed to appropriate participants. Determine appropriate outcome measure for the staff, site, and DCE project. Purchase materials and equipment for the home. Organize materials and equitment within the home and educate staff on location and use. Review research articles to determine previous outcome measures used within this setting. d by 3/18/22 All tasks were complete d by 3/25/22 Discus outcome measure with site mentor and home director to understand the best was to distribute. 12 Implementation Outcome measures will be completed and picked up by the end of this week. Understand outcomes of the project and begin analyzing and interpreting data. Discuss outcome measure with faculty mentor to decide appropriateness for the site. Pick up outcome measures from all participants who chose to complete one. Begin analyzing and interpreting All tasks were complete d by 4/1/22 24 13 14 Discontinuation Dissemination By the end of the week the project will be wrapped up with data analysis of the outcome measure complete. By the end of the week the project will be presented to important personnel. Ensure successful completion of the project along with analysis and interpretation of data related to project. Ensure proper communicatio n of project, outcomes, and education gauged during my time at the site. the data received from the outcome measure. Discuss completion of project with staff and leadership. All tasks were complete d by 4/8/22 Determine what other information or resources the site needs before leaving. Answer all remaining questions that the site might have. Disseminate to all important personnel. All tasks were complete d by 4/15/22  ...

... Designing and Implementing Sensory Modulation Rooms for Inpatient Psychiatric Adolescent Units Allie Gartner April, 29 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Taylor Gurley, MS, OTR, OTD DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 2 A Capstone Project Entitled Designing and Implementing Sensory Modulation Rooms for Inpatient Psychiatric Adolescent Units Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Allie Gartner, OTS Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 3 Abstract The purpose of this doctoral capstone project was to design and implement sensory modulation rooms for a male adolescent unit and a female adolescent unit within an inpatient psychiatric facility. In order to accomplish this, I collected donated sensory equipment and created a formal procedure/staff training protocol for the sensory modulation rooms to be utilized successfully and safely. Once the sensory modulation rooms were complete, the policies formalized and the staff trained/educated, the adolescent patients began to utilize the sensory equipment within the sensory modulation rooms in high distressed states. The main findings of the research project were a significant decrease in patient distress/arousal levels in high crisis states with use of the sensory modulation rooms. The findings of the research project also showed that patient perceptions of the sensory modulation rooms were mostly positive, whereas, staff perceptions were relatively mixed. Overall, the sensory modulation rooms yielded positive patient outcomes and served as a new form of holistic intervention that is rooted in occupational therapy foundations. Introduction DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 4 This doctoral capstone experience (DCE) takes place at the NeuroDiagnostic Institute (NDI), an inpatient psychiatric hospital, serving adolescent patients, both male and female. NDI is a part of a statewide initiative to integrate the Trauma Informed Care Model into psychiatric care (FSSA, 2021). The Trauma Informed Care Model includes various principles, but most significant in regards to the current DCE project is the principle of inter-professional care (Raja et al., 2015). NDI is currently not employing any occupational therapists or implementing any sensory modulation interventions to adolescent patients. To help NDI achieve the mission of integrating the Trauma Informed Care Model, my DCE project is to create two sensory modulation rooms with sensorybased equipment to fulfill the principle of inter-professional care by introducing the therapeutic benefits of occupational therapy. In the current literature on the benefits of sensory modulation interventions for mental health populations, there is a known gap in the research on using these specific interventions with adolescent populations (Bobier et al., 2015). However, research conveys that using a sensory modulation room for adolescent patients is an effective intervention in reducing arousal and reducing restraints/seclusion tactics (Bobier et al., 2015). Creating sensory modulation rooms at NDI on the adolescent units would expand the literature on these topics to increase further knowledge across the the scope of mental health care. Additionally, there is a steady decline in the presence of occupational therapy in mental health settings, although the research shows that occupational therapy interventions improve occupational performance and well-being amongst the mental health populations (Ikiugu et al., 2017). This decline in the presence of occupational therapy in mental health settings is shown by NDI not currently employing occupational therapists or utilizing occupational therapy interventions at their facility (FSSA, 2021). DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 5 This project idea is to benefit NDI by helping the facility achieve the goal of using the Trauma Informed Care Model in practice and by providing a new form of holistic intervention for adolescent patients to improve overall patient outcomes. Background Currently, there is a reduction in occupational therapy practitioners within the mental health setting, although occupational therapy interventions have shown to be significantly effective in improving occupational performance and well-being for mental health populations (Ikiugu et al., 2017). More specifically, the occupational therapy practice of sensory integration has shown to be effective for mental health populations due to the sensory modulation deficits those with mental illness typically have (Bailliard, 2015). Through a phenomenological research study, Bailliard (2015) identified that people report negative mental health states following sensory experiences incongruent with their patterns and preferences of sensing and that people use sensory anchors to produce positive mental states. Furthermore, through a scoping review of the literature, Bailliard and Whigham (2017) found that adults with mental illness often have impairments in sensory processing that impact their social cognition, social participation, cognitive performance, task attention and selfregulation. Current evidence shows that not only do those diagnosed with mental illness have sensory dysfunction, but they also have different sensory patterns dependent upon their condition or diagnosis. Brown et al. (2020) used the Adolescent/Adult Sensory Profile (A/ASP) on participants with various psychiatric conditions and found that typical sensory patterns amongst those with mental illness are sensory sensitivity, low registration and sensation avoiding. Through a quasiexperimental, comparative research design, Pfeiffer et al. (2014) identified individuals with serious mental illness (SMI) who self-reported high levels of low registration and sensory sensitivity identified less occupational participation, reduced quality of life and less perceived potential for recovery. Through a literature review of the current research, the evidence shows that those diagnosed with severe mental illness have sensory deficits that impact their occupational DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 6 participation, attention, engagement and performance and could benefit from guided sensory interventions to create therapeutic change. The current research conveys the effectiveness of using occupational therapy sensory modulation interventions to target sensory deficits for those with mental illness to improve overall occupational performance and engagement through self-regulation. Through a non-experimental, two-group research design, Knight et al. (2010) identified that using sensory-based interventions in conjunction with traditional mental health interventions is the most effective form of treatment for improving engagement and performance. The researchers also found that participants with mental illness preferred sensory-based interventions that utilized sensory equipment, such as squeezable items, rocking chairs, visual activities and music (Knight et al., 2010). Furthermore, Andersen et al. (2017) found the use of sensory modulation interventions in an inpatient psychiatric unit reduced rates of seclusion and restraint by promoting adaptive regulation of arousal and emotion compared to a control unit receiving normal mental health treatment. Similarly, Champagne and Stromberg (2004) identified the effectiveness of using sensory-based interventions in an inpatient psychiatric setting in facilitating self-organization, self-care and positive therapeutic change. The researchers also found the use of sensory-based interventions in an inpatient psychiatric setting adheres to the trauma-informed care model by addressing the individual needs of the patients and strengthening the therapeutic relationship (Champagne & Stromberg, 2004). The use of sensory-based occupational therapy interventions in an inpatient mental health setting helps to address individual patient sensory deficits and to improve occupational engagement and performance through a client-centered, innovative approach to mental health treatment. The current evidence conveys the most effective occupational therapy sensory-based intervention used for the mental health population in an inpatient psychiatric setting is a multisensory room or a sensory modulation room. Dorn et al. (2020) evaluated the use of a sensory room within an adult mental health rehabilitation unit and through a collection of arousal data found DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 7 there was a significant and consistent reduction in arousal levels for patients post sensory room experience. Similarly, Wiglesworth and Farnworth (2016) explored the use of a sensory room in a forensic mental health setting and found forensic patients experience stress-relieving benefits from the use of the sensory room and staff members perceive most forensic patients to engage with the sensory room as a way to relax and de-escalate. Barbic et al. (2019) used semi-structured interviews with mental health providers in an acute inpatient psychiatric setting to identify health provider perceptions of sensory modulation rooms. The researchers found health providers perceived sensory modulation rooms as empowering patients to self-manage their care experience and help patients down-regulate their emotions (Barbic et al., 2019). Bobier et al. (2015) identified a gap in the literature due to most of the current evidence on sensory modulation rooms in mental health settings targeting mostly adult populations. Through the exploration of a sensory modulation room in a child/adolescent psychiatric inpatient unit, the researchers found this sensory-based intervention increased patient and staff rated levels of energy, helped patients manage distress and agitation, and reduced seclusion and restraints (Bobier et al., 2015). Additionally, Seckmen at al. (2017) identified the use of a sensory modulation room on an inpatient adolescent psychiatric unit helped to increase patient and staff members sense of safety. The current and previous evidence supports the designing and implementation of sensory modulation rooms at NDI for the adolescent units. The occupational theory/model I chose to guide my doctoral capstone experience (DCE) is the Ecology of Human Performance (EHP). The conceptual emphasis of EHP focuses on the role of a persons context and how the features from this environment impact a persons task performance (Cole & Tufano, 2008). My main project idea for my DCE at the NeuroDiagnostic Institute (NDI) was to modify the physical environment for patients by creating sensory modulation rooms to increase patient outcomes and occupational engagement or according to EHP, task performance. Additionally, EHP focuses on a variety of environments, such as physical, social and cultural (Cole & Tufano, 2008). By creating sensory modulation rooms for adolescents patients at NDI, Im DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 8 modifying their physical environment, as well as their social environment, by providing a place to connect with other patients in a space geared toward their sensory preferences. EHP also provides five therapeutic interventions to help clients meet performance needs, including establish/restore, alter, adapt, prevent and create (Dunn et al., 1994). The use of this model guided my DCE through the therapeutic intervention lenses of adapt and create. I created sensory modulation rooms to promote more adaptable performance within their context of an inpatient psychiatric hospital and I adapted a piece of their context by providing a new environment for self-regulation to then improve task performance to meet daily demands (Dunn et al., 1994). The frame of reference (FOR) I chose to guide my DCE is Sensory Integration (SI). To better understand adolescent patient sensory preferences/patterns at NDI, I utilized an adapted sensory diet activity checklist created through the lens of the SI FOR (Cole & Tufano, 2008). Currently, there is limited research on the use of sensory modulation interventions for adolescents with mental illness, which is a part of my clinical reasoning behind creating sensory modulation rooms at NDI for my DCE project. In creating successful sensory modulation rooms, the SI FOR guided my implementation by ensuring the adolescent patients sensory preferences were adequately met and the sensory interventions were grounded in evidence-based research. Additionally, the use of the SI FOR helped me to identify the sensory equipment within the sensory modulation rooms and what sensory systems the equipment helps to modulate. Both EHP and SI are frequently used together in practice because both place an emphasis on how environmental modifications can impact overall engagement and performance. With the use of this model and FOR, I was able to design and implement sensory modulation rooms that helped to reduce the gap in the literature and improve patient outcomes for adolescent patients at NDI through appropriate sensory interventions. DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 9 Project Design and Implementation This current DCE project was to design and implement sensory modulation rooms on two psychiatric adolescent units to introduce a new form of intervention and to promote positive patient outcomes by reducing arousal/distress levels in periods of escalation and psychiatric crises. In order to complete this project successfully and accurately, the design of the sensory modulation rooms and the sensory equipment needed had to be considered. To begin the process, I created donation flyers with sensory equipment determined collaboratively by youth nursing directors to disperse around NDI, personal social media and the University of Indianapolis Occupational Therapy department to receive donations for sensory room implementation due to limited funding from the facility (see Appendix A). Brown et al. (2020) suggests that those with psychiatric conditions have varying sensory preferences and patterns. Due to this evidence, I adapted and utilized the Sensory Diet Exploration: Activity Checklist to assess patient sensory activity preferences prior to the use of the sensory modulation rooms to guide interventions and remain client-centered (Champagne, 2011) (see Appendix B). This measure was selected for sustainability purposes, as NDI does not currently have an occupational therapy department, meaning the assessment measure selected had to be easy to administer by all professions. To measure arousal/distress levels of patients prior to and after use of the sensory modulation rooms as an outcome measure, the Subjective Units of Disturbance scale (SUDS) was adapted and utilized within each sensory room session (Kim et al., 2008). The adapted distress measure was integrated into a guest check in sheet, along with additional sensory modulation room use information to be filled out by a staff member with each patient use of the room (see Appendix C). Prior to the sensory modulation rooms being made available for use by patients, a thorough policy/procedure for the sensory rooms needed to be developed. I created two sensory room binders, one for each adolescent unit. The sensory room binders contained the guest check in measure mentioned above, each current patients sensory activity preferences, a policy/procedure document collaboratively written by nursing, unit and medical directors, a DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 10 training/educational PowerPoint presentation and an inventory list of all the sensory equipment. As a part of the policy/procedure created collaboratively amongst youth staff, the decision was made to have sensory rooms with equipment deemed safe and sensory carts with equipment deemed unsafe. Each adolescent unit had a sensory room with an associated sensory cart where the sensory binder was stored. Additionally, youth staff had to be thoroughly trained on sensory modulation, the purpose of the sensory rooms and the safety protocol/procedure of the sensory rooms. With minimal time and limited ability to gather all necessary staff at once, I created an easy to understand, in-depth training/educational PowerPoint presentation for youth staff to review and an associated formal document for youth staff to sign and submit to their unit director/service line manager acknowledging their training was complete. Additionally, a survey was created throughout the formal implementation of the sensory modulation rooms for youth staff to submit their perceptions of the sensory rooms and make suggestions for improvements. Project outcomes The development and implementation of two sensory modulation rooms on the adolescent units at NDI yielded various beneficial results, including the first two formal sensory modulation rooms to be designed at NDI (see Appendix D). Prior to the youth patients accessing and utilizing the sensory modulation rooms, I assessed their sensory activity preferences to identify a foundational understanding of each patients sensory processing patterns. This evaluation step was deemed important based on the research of Champagne (2011) in which she conveys the importance of accurate assessment of each individuals sensory processing patterns due to patients with mental illness having escalated symptoms to varying degrees from one another. Therefore, relying on the extensive research of Champagne (2011), I adapted and utilized the sensory diet exploration: activity checklist to easily assess youth patients sensory preferences/patterns through an interview (see Appendix B). This measure was also chosen for sustainability purposes in which any staff member could assess patients utilizing the measure due to the facility not having an occupational therapy DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 11 department. The sensory activity measure yielded various apparent outcomes. Youth patients identified various sensory activities as being regulating to them, however, a few were commonly noted by each patient; rocking in a rocking chair, bouncing on an exercise ball, the use of a weighted blanket, the use of various fidget toys/stress balls, the use of varying scents, dim lighting, the use of an MP3 player, therapeutic heat and visual fixating on rainbow colors. Additionally, a guest check in measure was created and adapted utilizing the subjective units of disturbance scale (SUDS), which has been shown to have sound psychometric properties in measuring distress levels and used in prior, similar evidence-based research (Kim et al., 2008; West et al., 2017). The adapted guest check in measure identified the patients initials, the staff initials/position, the time/date, the patients distress levels prior to and after the sensory modulation room use, the sensory equipment used and additional reflections with every sensory modulation room use (see Appendix C). Within 4 weeks, the sensory modulation rooms were used on 9 different occasions by 3 different patients (2 female adolescents, 1 male adolescent). However, staff were inconsistent with completing the guest check in measure, resulting in these final results underestimating the total use of the sensory modulation rooms and the number of patients utilizing the sensory modulation rooms. Through patient interactions, it was found that at least 3 other patients utilized the sensory modulation rooms and on multiple occasions. The guest check in measure utilizing an adapted version of the subjective units of disturbance scale (SUDS), identified a reduction in distress and arousal levels for patients 80% of the time with use of the sensory modulation rooms. However, the other 20% in which distress levels increased with use of the sensory modulation rooms were determined to be occasions in which the patients verbalized no reduction in distress, but staff identified an observational reduction in patient distress levels despite this verbalization. The guest check in measure also identified that the sensory equipment used most often within the sensory modulation rooms to be essential oils, exercise/peanut balls, fidget toys, sound machine, heated stuffed animal, galaxy projector, rocking chairs, scented and non-scented bubbles, soft pillows and various tactile floor tiles. Across gender, both male and DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 12 female adolescent patients were identified to be utilizing the sensory modulation rooms an equal amount of the time. Through reflections listed on the guest check in measure, as well as verbalizations through patient interactions, positive patient perceptions of the sensory modulation rooms were identified. After one occasion utilizing the sensory modulation room, patient A stated I like the room! I almost feel too calm. Upon discussion with patient B, they shared I love having this option because it really helps calm me after use of the sensory modulation room. Through a created survey and various staff interactions, mixed staff perceptions of the sensory modulation rooms were identified as well. Upon discussion with a special attendant (SA), they shared the sensory rooms have become an important part of the patients days. However, a psychiatrist on one of the units also shared the sensory rooms are being slightly underutilized due to some staff not wanting to learn how to integrate this new intervention into the daily routine. Overall, both sensory modulation rooms have shown positive outcomes to some varying degree and continue to be used daily to improve individual patient outcomes. Summary The aim and associated positive project outcomes of this doctoral capstone research aligned consistently with previous and current evidence-based research. The current research stresses the importance of occupational therapy on the interdisciplinary team in mental health settings to improve patient outcomes overall through various interventions, such as sensory modulation rooms (Ikiugu et al., 2017). Additionally, Bobier et al. (2015) identified the use of sensory modulation rooms with adolescent patients in psychiatric settings to have a positive impact on reducing arousal levels and reducing need for restraints/seclusion. The introduction of sensory modulation rooms to the youth units at NDI facilitated similar outcomes in which patients were shown to have a reduction in distress/arousal levels following use of the sensory modulation rooms. However, NDI youth staff perceptions of the sensory modulation rooms were found to be slightly different than previous and current research. Barbic et al. (2019) found staff perceptions of sensory modulation rooms to be DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 13 overwhelmingly positive, however, most of the previous research on sensory modulation rooms include an occupational therapy department to oversee the process and outcomes. This doctoral capstone project was conducted in a facility in which an occupational therapy department was absent, which resulted in the introduction and use of the sensory modulation rooms being a new form of intervention and experience for the facility. This could very well be the reason staff perceptions of the sensory modulation rooms in this doctoral capstone research were mixed compared to mostly positive perceptions in previous research. Additionally, there is a well-known gap in the current research on the benefits of sensory modulation rooms for specifically adolescent and youth patients (Bobier et al., 2015). The positive outcomes of this research help to bridge that literature gap and to increase knowledge throughout the mental health care community on the benefits of sensory modulation rooms for not just adults, but adolescents as well. Conclusion Throughout the 14-week long doctoral capstone experience, two sensory modulation rooms were designed and implemented within a male adolescent psychiatric unit and a female adolescent psychiatric unit. Through this project implementation, NDI as a facility gained a new form of holistic, client-centered intervention for their adolescent populations. Though due to unfamiliarity with occupational therapy and sensory modulation room interventions, the sensory modulation rooms were slightly underutilized. The findings of the sensory modulation rooms showed significant benefits in reducing patient distress/arousal levels in escalated states, yielding positive outcomes overall. In order for the sensory modulation rooms to be sustainable at the facility, I recommended the employment of at least one occupational therapist. The creation of an occupational therapy department has been proven to be a necessity at this facility based on the positive outcomes of this doctoral capstone project and the increasing demand of high quality care needed for positive patient outcomes in this setting. For future implications, continued research on the benefits of sensory DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS modulation rooms for adolescent psychiatric patients is necessary for this form of intervention to become a well-established norm within psychiatric hospitals. 14 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 15 References Andersen, C., Kolmos, A., Andersen, K., Sippel, V., & Stenager, E. (2017). Applying sensory modulation to mental health inpatient care to reduce seclusion and restraint: a case control study. Nordic journal of psychiatry, 71(7), 525-528 Bailliard, A. L. (2015). Habits of the sensory system and mental health: Understanding sensory dissonance. American Journal of Occupational Therapy, 69(4), 6904250020p16904250020p8 Bailliard, A. L., & Whigham, S. C. (2017). Linking neuroscience, function, and intervention: A scoping review of sensory processing and mental illness. American Journal of Occupational Therapy, 71(5), 7105100040p1-7105100040p18 Barbic, S. P., Chan, N., Rangi, A., Bradley, J., Pattison, R., Brockmeyer, K., ... & Mathias, S. (2019). Health provider and service-user experiences of sensory modulation rooms in an acute inpatient psychiatry setting. Plos one, 14(11), e0225238 Bobier, C., Boon, T., Downward, M., Loomes, B., Mountford, H., & Swadi, H. (2015). Pilot investigation of the use and usefulness of a sensory modulation room in a child and adolescent psychiatric inpatient unit. Occupational Therapy in Mental Health, 31(4), 385401 Brown, C., Karim, R., & Steuter, M. (2020). Retrospective analysis of studies examining sensory processing preferences in people with a psychiatric condition. 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An exploration of the use of a sensory room in a forensic mental health setting: staff and patient perspectives. Occupational Therapy International, 23(3), 255 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS Appendix A Sensory Equipment Donation Flyer 18 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS Appendix B Sensory Diet Exploration Activity Checklist 19 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS Appendix C Guest Check in Measure 20 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS Appendix D Sensory Modulation Rooms on Youth Units 21 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS Appendix E DCE Timeline 22 DESIGNING AND IMPLEMENTING SENSORY MODULATION ROOMS 23  ...